Will's lung transplant blog

Christmas blows

2010-12-26T11:32:00.001Z

Happy Christmas to everyone! Another Christmas day is past and I'm sitting here in front of bad telly - some kind of creepy snowman based film - enjoying a surfeit of chocolate based snacks.

I eventually did get the results of the lost biopsy last Monday and it was negative, thank goodness. So the problems I've had with lung function must have been viral all along, which I guess is some kind of comfort.

This morning I did my blows for the first time in a while, as I was finding getting the lower results a bit depressing, and the numbers are up slightly. So I'm now about 10% under best rather than 15 or 20. Hopefully by my next clinic visit on the 5th I'll be ok again.

Off for a walk in the snow now. Have a great holiday and don't eat too much!

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Lost biopsies

2010-12-17T12:21:00.001Z

My lung function has now been down for around 2 months so the docs finally decided to bronch and biopsy me on Wednesday this week. The deal is that you stay in overnight and get the biopsy results to see if there is any rejection around 5pm the next day. So I sat there reading and trying to forget the trials of my recent life all day yesterday, only for the consultant to turn up at 5 and announce they seemed to have lost my biopsies and so had no result for me. He said it shouldn't happen, there are systems etc etc. And off he went to the lab to give them hell and try and find my precious lung cells.

This left me and Vicky sitting there with dropped jaws and anger simmering away - he had just said that if they didn't find the biopsies he'd want to do the bronchi again next week which, if they gave a positive result of rejection, would lead to me being in hospital for treatment over Christmas. Argh!

Half an hour later a call came through to the ward to say they'd found the samples but wouldn't have results till the end of Friday (today). So I was sent home to sit it out and wait for the call, which is what I'm doing now. If it comes back positive I'll be back into hospital over the weekend and Monday for steroid treatment. If negative the doc is thinking of easing off my immunosuppression a little to give me a better chance of getting over these viruses that I've been rather prone to get. He is planning to drop back the mycophenalate from 1g twice a day to 750mg twice a day. He said visually the lungs looked fine, and the x-ray was fine, so here's hoping for a negative...

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Just a virus then

2010-11-09T16:33:00.001Z

I've had a good series of indecisive wobbles over the last few days. Having been offered the FOB on Friday morning and turned it down, I woke up on Friday feeling not so hot and my blows were down so I rang again. They managed to squeeze me in and so I did get the FOB after all. Karthick (sp?), the doc doing the bronch said he'd take a look and use his judgement whether to take a biopsy to check for rejection. When I woke up on the ward he said he'd seen inflammation of the upper airway and that was consistent with a virus, and lower down looked ok so he didn't take the biopsy.

Today I went back to clinic and the tests from the bronchi didn't grow any bacteria (so no antibiotics) but did grow adenovirus, i.e. a cold.

So it seems I have a virus and will just have to wait to get better. As the doc said today 'unfortunately you are in the land of normal people for this one - nothing we can do'.

Reassuring I guess but I'd really like that lung function back, and whatever is said I know I'll be anxious until my blows are back to normal.

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Fobbing indecision

2010-11-03T15:47:00.001Z

How can you tell a virus from a bacterial infection from rejection? Good question and it seems neither me or my doctor can work it out. It is more and more apparent to me as I go down the post-transplant time line that this whole thing is basically educated guesswork, and the doctors seem to agree and say as much.

I went to clinic last Tuesday, just over a week ago, and was given Jas' post-1 yr anniversary blessings, had a positive chat, and he said he didn't need to see me until January. My blows were a bit down, but hey, it's probably a little virus and nothing to worry about. 'Ring us if they continue to drop'.

So I rang on Friday when things, instead of being about 5% under my best dropped to 10% under my best. I was told to wait and monitor over the weekend and see how it goes. So I did. And it was up and down a bit but on Monday was still bad, and I was complaining of chest aching and tenderness, especially on my right side, preventing me sleeping on that side.

So today I went back to clinic and my blows were marginally lower than a week previously, but not a massive drop. I talked to the doc at length and he eventually decided to FOB me this afternoon, just to check for rejection. But then they said they'd have to cancel my bronch as there wasn't room (which I took as code for a bit of triage going on and me being a borderline case and dropping off the bottom of the list...)

So here I am writing this instead of having bits chopped out of my lungs. They offered me Friday am as an alternative but that would totally ruin fireworks night and the weekend, so I've gone for next Tuesday - clinic again and then, if required, a FOB. Doc seemed happy with that approach.

With a bit of luck it'll sort itself out over the weekend. Here's hoping.

Problem is that a normal person, if they get a respiratory virus, might feel a bit tight in the chest or have a bit of a cough, but wouldn't know if their lung function was affected. If you are a post-tx person then you are measuring those blows every day and so see every little variation and who's to say that a normal person wouldn't also see a 10% drop if they had a cold?

Just need to try harder to avoid getting the viruses in the first place...if it is a virus and not rejection...and won't know that till next Tues...

First year milestone passed

2010-10-24T00:16:00.001+01:00

It is 6 mins into day 366 post op, which means I'm into year 2. Thank you to everyone for your support, kindness and friendship over the last year.

This time last year I was off the ventilator in the critical care unit and Vicky was just heading off along with my sister for some sleep having completed a nerve wracking 24 hours.

Tonight we celebrated with last minute tickets to Avenue Q in the west end - utterly hilarious and very rude...with muppets!

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Donor Day

2010-10-22T08:53:00.001+01:00

October 22nd 2009. The day before my transplant in the early hours of 23rd October, and in fact the day I got my call at ten to midnight. On this day, somewhere, probably in the South or East of England, a tragedy happened and a family lost a son, daughter, wife, husband, mother, father, brother, sister, niece, nephew, cousin... Of course I still don't know to this day the identity of my donor, but every year on this day I will feel sorrow and sympathy for that family, mixed with incredible humility and gratitude. Tomorrow I shall celebrate the first anniversary of my new life; today I mourn my donor's death. Out of death came a gift. Out of a gift came life.

This experience has been the closest thing to a miracle that there is. Please join the donor register now and let others have the chance to live and love some more. http://www.organdonation.nhs.uk/

Another set of holes

2010-09-26T13:05:00.002+01:00

I'm back home having been released from Vascular Ward L5, Bay 1, Bed A on Saturday at around midday. I was glad to get out of a very strange place populated by odd men, mostly from Bury St. Edmunds it seemed, talking in broad Suffolk accents about their diabetes and the amputations of legs and toes they'd just suffered. So I was busy dry retching in the corner while the old boy opposite, Frank from Bishop's Stortford, "Oi'm 82!!" strained loudly to have a shit into a potty while lying on his bed, weird John from Bury screamed as the nurse applied a vacuum dressing to his recently amputated toes and Trevor, a belligerent ex-shop steward (trade union official) with seemingly very limited intelligence made his best attempt at fairly cruel banter to all three of us when not explaining how 35 years of mis-managing his diabetes had led to his leg being taken off below the knee, and then how he fell on the stump and had to come back in to get it fixed.

I guess in a sense this was a fascinating insight into both the broad swath of humanity out there but also into an area of medicine I'd never really encountered before, but it would have been nicer to have been around other people who'd had Upper GI surgery so the nurses were more attuned to my needs.

As Vicky has said it was pretty horrible but is getting better fairly rapidly day on day and I'm feeling less pain, less sickness, and am managing to eat a little more each day. I think it'll be ok. And I'm no longer refluxing, which is quite pleasant and at least showed the surgery did it's job.

...and as well as the long armpit to armpit clamshell scar and the four drain holes from transplant I am now the proud owner of another 5 scars in my stomach.

You will note where the chest wig ends just below the scar from transplant (not even visible now through the hair!) thanks to them shaving the operation area. Luckily I am like Esau, an hairy man, (Genesis 27:11 - look it up), which means I won't inherit the kingdom of God (only smooth skinned men appear to do that) but it does mean it'll grow back and the scars will disappear in the forest.

P.S. Thanks for all your lovely comments and support over the last few posts. And Jess, thanks for your reply on the CF forum too - if you had this done with CF lungs then I'm in serious admiration. I had a bit of sputum the few days after this even with tx lungs and coughing it up hurt! I've no idea how I'd have managed before tx.

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Definitely not fun(do)

2010-09-24T20:11:00.001+01:00

So, there's been radio silence from us for a few days. Will has been having a rough time - I can't believe people ever have this operation as a day case. He's had a lot of pain, a LOT of nausea, hot and cold flashes, dizziness... The whole thing has not been the walk in the park the docs tried to say it would be (though Will never believed them anyway). He's on a random vascular ward, because that's where there was a bed, and no one is interested in fundoplications, calorie intake or transplants. There's been a cannula and IV/oral meds saga, explosive diarrhoea (sorry), an unexpected catheter requirement and a whole load of dry retching. He seems to have turned a corner today, perhaps, and is planning on coming home tomorrow, armed with paracetamol and oral ondansetron (sp?).

To add EXTRA fun to our lives, I've got the first proper cold I've had for about two years, so haven't been to see Will for a few days. The plan, however, is that tomorrow I will wake up miraculously healed, decontaminate the house, change the bed sheets, not cough, and go and get Will from Addenbrooke's. We then embark on the next phase: Calorie Maximisation From Liquid Foods While Experiencing Constant Nausea and Stomach Pain. Ah, grant us strength to get through the days and weeks to come...

So, what's a sad and cold-ridden young woman to do on a Friday night when her husband is having a miserable time in hospital? The answer seems to involve pyjamas, series 3 of Sex and the City and a box of chocolate eclairs... Do women just want to be rescued? Ha!

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It is done

2010-09-21T16:07:00.001+01:00

I am sat with Will now. The docs are happy with how the surgery went. He has some shoulder pain. This is referred pain caused by gas in his stomach that was used to blow it up during surgery. He has a PCA with fentanyl and some IV paracetamol and the pain is reasonably well controlled. So far not much pain around the stomach or incisions, but am sure that will come. He is managing small sips of water but swallowing is tricky. Ciclosporin soon, which may be interesting given the horse pill nature of the tablets. We're going to try the 50mg pills instead of the 100s.

I had a minor panic earlier. When I rang to find out what ward Will was being taken to after recovery, they said he was back at the treatment centre (where we started, not an overnight ward) and would be going up to day surgery later. I thought that meant he needed more surgery... But apparently it's just another ward. Phew. Hospitals are no fun - how is it they manage to make me shiver and sweat at the same time. Nice.

I will keep you posted. Will is sleepy and pretty dopey from the fentanyl.

Edit: Will told me the gas is in his abdomen, around not in his stomach. Apologies for that factual inaccuracy.

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Tummy Tuesday

2010-09-21T09:29:00.001+01:00

Will went down to theatre at about 8.15 this morning. First on the list. Hopefully things are now underway - it's just after 9am. I cried a little after saying goodbye, which is madness given that I didn't cry at all when he had his transplant. There was no time, there had been no lead up, and my body was awash with adrenalin. Am worried am becoming slightly hospital phobic. That would be problematic. Still, this time I have the entire food hall at Addenbrookes at my disposal, which is very different to the late-night Papworth experience. It's a weird thing about Papworth - it's actually very small and therefore there are minimal opportunities to part with money. Or to find even half decent coffee. This time I am alone though. Nothing as lonely as a hospital while your loved one is under the knife. Though he's not literally under the knife, I suppose, under the laproscope or whatever the piercy/proddy thing is called. Ok, am waffling, time to go and browse some trashy magazines...

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Here we go again

2010-09-20T14:18:00.003+01:00

Tomorrow's the day. I guess you could call it 'tummy tuesday'. I have to report to Addenbrookes by 7am tomorrow morning and I'm hopefully on the morning list so won't have to wait too awfully long, getting nervous.

When I had the gastroscopy the surgeon said that there was a lot still in my stomach from the previous night, so he advised me to have 48 hours of clear liquids only before this operation. I've kind of compromised and gone for eating not that much for the first 24 and then only liquids today. God, I'm hungry! Must go and have some juice or something to get over my current sugar crash.

At least I don't need to worry too much about my lungs. Did some record breaking blows this morning - no idea why - there seems to be no rhyme or reason to it.

I am just hoping this won't be as bad as I imagine and that I can get over it relatively quickly. A necessary evil.

Happy days #1

2010-09-17T19:33:00.002+01:00

Vicky here. To give you all some cheer before Will's op and his resulting misery, here's a marathon catch-up photo tour of some of our happy summer days. More to follow, but these are the ones on the iPad:

Summer walks on empty Exmoor

Sunny days - Will and his mum

Summer barbecues - Our nephews and niece (can children get any cuter?)

More cycling photos from the transplant games: here's Will lining up with the scary kidney transplant men (except the guy behind him, who is another CFer)

Going for it!! Did I tell you I cried? Don't think I've ever felt so proud and grateful in my life...

Chatting with Anne, a Papworth nurse who goes along to the games each year. She coordinated Will's transplant, so is kind of a special person to us!

Back with more photos soon!

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Gout - isn't that a bit medieval?

2010-09-10T16:16:00.000+01:00

Well, yes...but no. I suddenly feel compassion for Henry VIII.

It is surprisingly common in the general population, apparently, and very common as a post transplant complaint. I've noticed for a few weeks now a tell-tale pain in the last joint of my right big toe. Not there all the time but very painful when rubbing against fabric (sliding under the bedclothes, or pulling on a pair of jeans) and agony to bend if my toe is pointed.

I asked at clinic and they thought it was probably a mechanical injury as it wasn't a constant pain, but said they'd check my uric acid levels anyway to make sure. They came back a bit high, so I'm now on 20mg prednisilone steroids again, but only for 4 days, or until the pain goes away. At which point I have to do a week's course of 100mg a day Allopurinol which reduces the uric acid levels and should prevent it coming back for a while.

Vicky read that the uric acid and resultant gout can be more prevalent with diabetes, and after the hospital stay and the methyl pred for rejection my sugars went loopy for a while - that pretty much coincided with the start of the pain. So hopefully if I take the course of Allopurinol and then manage not to get more rejection it might not come back.

Oh, and I seem to have a mild case of 'runner's knee' after attempting to do some running two days in a row, overdoing it and straining my knees.

There's always something eh? I asked Vicky one morning how she was doing - "oh, fine". How about physically? - "yes, fine, no problems". What? How can you just be completely ok with no niggles at all? I never seem to quite get to that stage! But, hey, this is all minor stuff and generally all is good.

I may be blogging less positively after Sept 21st though, so prepare yourselves for the moaning onslaught!

A stressful time

2010-09-02T12:38:00.000+01:00

Reasons to be stressed:

Blows feeling a bit shaky - they haven't hit the 'down 10%' threshold where I need to ring the hospital, but I am struggling more and more to get a good one. The consistency isn't there, and the average I get is around 3.10 FEV1 compared with a best of 3.36. I'll do a few in the 3.05, 2.98 range and then get a random 3.20 which will make me feel better...
My funcoplication is booked for 21st September and I'm getting nervous and a bit panicky. As soon as you search the web you come across horror stories on forums of the procedure. I'm worried about: maintaining weight, having an appetite, eating sludge for a few months, stomach pain and discomfort - and all that turning me into a miserable sod and the impact that'll have on long-suffering Vicky... Usually a surgical procedure is to improve quality of life. This one is guaranteed to decrease my quality of life. Hopefully a short term pain for a long term gain (staying alive longer!).
My mother is getting worse with her Alzheimer's quite quickly. She is insecure and worried and calls me and my sister 4 or 5 times a day. It's distressing and very hard to understand what her problems are, or why she called as she has such problems with language.

Sometimes it feels like it all happens at once. On the back of all this I feel guilt for being stressed or pissed off since I should be grateful for the fact I'm alive, have had a transplant, am well. And of course I am grateful underneath - I still celebrate at every physical exertion achieved, at every good night's sleep. It's just so hard to feel so well and be faced with an operation that will make you feel ill again.

Macaronner

2010-08-25T19:51:00.000+01:00

Macaronner: to mix the ingredients for Macaroons (or French Macarons).

That's what I've been doing this afternoon on a very pleasant day's holiday - making Salted Butter Caramel Macarons. It is very hard getting these little biscuits right and the whole process took about 4 hours.

If you're interested the recipe is here: www.girlcookinparis.blogspot.com/search/label/Macarons

The oven is rubbish so out of 50 halves that went in only 20 were
usable and 10 perfect and looking like this:

The recipe is basically Pierre Herme, and you can buy his version in Selfridges for £1.70 each! After 4 hours I understand why!

Day 2 - Cycling

2010-08-21T20:26:00.000+01:00

Well I definitely didn't win the cycling! There were a lot of blokes with a lot of gear, including the man who won the event in the last world games. He did the 5km in 8:12 - I did it in 14:18. To get bronze in my age group of 30-39 I would have had to get under 10:45.

All that said I think I did pretty well. I was certainly not slowest and I think I worked harder physically doing that 4 laps of Victoria Park, Bath than I've ever worked before. It was a cruel course with a really nasty hill and each time up it was more of a struggle.

Everyone was very supportive and most of the fast guys, if I said I was only 10 months post-transplant and, by the way, it was a double lung for CF, seemed genuinely impressed.

I just need to grow bigger legs!

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Table tennis done...

2010-08-20T18:03:00.001+01:00

After being cripplingly nervous last night and this morning I've survived the table tennis competition - and before you ask, no I didn't win. I won one and lost 2 in my group so didn't quite progress to the second round. I was very annoyed as there was one guy I really should have beaten and one I almost beat. Still...next year...

At the opening ceremony last night I got to hold the Papworth placard as I was new to the team.

And here's a photo of the three of us in the Papworth team who did the TT.

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Radio fame and the games

2010-08-18T12:41:00.000+01:00

It's the British Transplant Games this weekend in Bath and I'll be doing the 5km cycling time trial and the table tennis competition. I'm dead nervous and I reckon it'll be a fairly hopeless performance from me, but hey it's worth a go.

I had a call out of the blue yesterday afternoon from BBC Radio Cambridgeshire and then they rang back to do a little interview about my 'story' and the fact I was taking part in the games 10 months after transplant. It was broadcast yesterday at about 5:20pm on the Drive Time show.

If you want to hear what I had to say, and how posh I sound (an awful surprise for me!), then you can get the show on BBC iplayer (I think this only works if you're in the UK).

http://www.bbc.co.uk/iplayer/episode/p009b74z/Antonia_Brickells_Drivetime_Show_17_08_2010/

Start listening at 1h18m18s.

After this weekend I'm sure we'll do an update with photos of the experience of the Games!

(Fun)doplication?

2010-08-17T12:51:00.000+01:00

The short answer is: probably not.

I finally got my appointment with the upper GI surgeon at Addenbrookes last Friday. He is a fairly humourless Australian, but maybe that's what you want from a surgeon - the lack of humour, that is, not necessarily the Australian-ness.

Backtracking a bit, I had Papworth clinic last Wednesday and met with Jas, who showed me some pretty convincing evidence from a study carried out at Duke in the US on transplantees and fundoplication. The whole study is here: http://jtcs.ctsnetjournals.org/cgi/content/full/125/3/533 but the key interesting graphs I thought I'd copy in.

Fig. 1. Average FEV1 values in lung transplant recipients who also underwent fundoplication surgery for treatment of reflux. Patients were at least 6 months from both their lung transplants and fundoplication procedures to allow stabilization of pulmonary function. A significant improvement in FEV1 was documented in this group after fundoplication.

Fig. 2. Effect of GERD on survival: Kaplan-Meier actuarial survival curves for overall lung transplant recipients compared with the group of lung transplant recipients who also underwent fundoplication surgery after being evaluated for GERD. The fundoplication group had a significant survival advantage.

p.s. GERD stands for Gastro-esophageal reflux disorder.

Fig. 3. Effect of fundoplication on survival. Kaplan-Meier actuarial survival curves for patients evaluated for reflux by 24-hour pH studies, comparing the group with documented reflux versus the group with no reflux. A significant survival advantage was seen in the patients with normal pH studies.

Fig. 4. Kaplan-Meier actuarial allograft survival curves: allograft survival of at least 6 months to adjust for differences between organs on the basis of early technical variables. A, Overall allograft survival (6-month survivors) for patients undergoing kidney, heart, and lung transplantation, documenting a worse outcome in lung transplant recipients. B, Overall allograft survival in lung transplant recipients who did not have reflux or whose reflux was corrected by means of fundoplication compared with recipients of kidney or heart transplants. Allograft survival among the 3 groups was almost identical.

What I get out of this is that even though this isn't a controlled double-blind trial there is some significant evidence here that:

Doing a fundoplication stops acid reflux, and people with reflux don't survive as long as those without
Doing a fundoplication might increase my FEV1
Lung transplant people don't have as good survival as hearts and kidneys, but if you do a fundoplication you might get a similar survival stat to those heart and kidney people.

Now, talking to the GI surgeon I mentioned this study and he said he wasn't as convinced as Jas at Papworth was by these results. "It won't be guaranteed to solve all your problems" he said. But he did agree that having reflux and possibly aspirating that stomach contents into the lungs is always going to be a bad thing. He has done 30 procedures on lung transplant people and all of them were happy they had the procedure. There are the obvious downsides to do with the recovery period of liquids, then soups, then mushy food, and the possibility of never being able to manage big chunks of meat or dry bread - and of course losing some weight during recovery.

All in all I know it is something I need to do, but something I wish I didn't have to go through. Another surgery, another general anaesthetic, another recovery. It shouldn't be anywhere near the same scale of discomfort as the transplant as it is a laproscopic (keyhole) surgery - so I'll end up with another 5 little scars on my front - 4 for tools, and 1 for the camera.

On Friday afternoon the surgeon performed a gastroscopy on me to have a look around down there. It was very unpleasant as I seem to have a pretty active gag reflex, and he said there was still a lot of sludge in my stomach, even though I hadn't eaten since the previous evening (OK, so it was a blow out dinner for my Dad's birthday, but I didn't admit that to him!). He said reflux can also have the effect of slowing down digestive transit, so that could be part of the reason. There was a tiny hiatus hernia, where a little bit of stomach pokes up through the diaphragm, but that is fixed during the procedure too.

The surgery has been booked in for 21st September, 5 weeks today.

Blows and bad dreams

2010-08-05T17:39:00.004+01:00

My blows came back to normal, even setting a new record last Sunday. Since then things have dropped back a little, but hopefully not enough to be worried (about a 4% drop from the record blow). This is all generally encouraging, in that I can get some rejection, be treated and bounce right back after a couple of weeks. I've held the pred at 10mg for 5 days now, delaying dropping back to 5mg because of the little drop in blows.

I find myself quite a stressed person these last few weeks. Work pressure doesn't help, with nebulous projects and a lack of resource making me worry. That combined with impending endoscopy and consultation about the nissen fundoplication, the continuing anxiety about lung function, and the Transplant Games in two weeks time is resulting in a bit of a tricky period.

I don't know if it is because of this or because of drugs, or sugar levels, but I have had unsettling dreams for the last couple of weeks. I know the steroids can give you nightmares, but mine are continuing even through the reduction in dose. I guess it is a combination of factors.

The dreams are generally meetings with doctors where I am told things are going terribly wrong, or, like last night, where I start coughing up CF-style sputum again and the doctors say there is nothing that can be done. I wake up and breathe, try a few little coughs, and after a few minutes convince myself it isn't real. But it is certainly not conducive to waking up feeling relaxed and ready to face work and the world. I hope it stops soon.

Home on my 9 month anniversary

2010-07-23T21:48:00.000+01:00

I made it out, and on my 9 month transplant anniversary too. My sugars seemed to be more under control yesterday and so far even more so today, and my lung function is gradually improving - I'm only about 10% under my best, or normal, levels now. I woke up at 3am last night with a slightly worrying rattle in my left lung, got up and did a few 'huffs', or forced expirations, and eventually coughed up a blob of blood about the size of a 5p piece. A bit disconcerting, but a very normal result of having a biopsy of the lung. I mentioned it to Jas this morning and he didn't seem to worry.

So I was sent home with a blood glucose monitor and finger pricker (ouch!), as well as an insulin pen and some tiny little needles. They want me to monitor my sugars four times a day - when I get up, before lunch, before dinner and last thing at night - and if before lunch or dinner it is higher than 8 mmol/litre to give myself a little shot of insulin. So far today all my readings have been normal, so no insulin required and hopefully things will continue to improve as the steroid pills are tapered off over the next week.

Still, I guess it is useful to get the training out of the way with the diabetes stuff before it becomes a permanent feature of my post-transplant life as no doubt it will, especially if they at some point decide to change my Neoral (cyclosporin) to Tacrolimus, which sends virtually everyone that way.

Now for a relaxing weekend...

Still in here

2010-07-22T19:26:00.001+01:00

Another day in paradise...

Jas was back and on the ward round this morning. That man certainly calls a spade a spade which I guess is good but can also be scary. "your gut may just be colonised with campylobacter now", "we might want to do a colonoscopy if it comes back". And other gems.

I'm finding dealing with variable blood sugars really hard from a mental perspective - I'm really hoping it settles although it seems everyone turns diabetic on the immunosuppression eventually, especially CFers who are more prone anyway. It seems to have been a bit better today and I haven't had any insulin yet.

My lung function was very slightly up this morning although I was very tight on my upper airway - there was almost a whistle as I breathed in. Things got better through the day and I tried my blows again this afternoon and got a good improvement - now back to around 10% down on my best.

So I'm hoping that these two things combined will get me an honourable discharge tomorrow and I can try and get back to normal life.

The last thing is that I repeated my concerns over the delay in getting even an appt to discuss the fundoplication with Jas and when the transplant coordinator chap popped round at 4pm he said they'd talked to Addenbrookes today and an appt is in the post for me! He has some influence that Jas Parmer...

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'minimal A1'

2010-07-21T16:57:00.001+01:00

That then is the bronch diagnosis. Those of you with long memories may remember I had some A1 rejection fairly soon after the transplant and they treated it with raised oral steroids for a while. In this case we don't and can't know whether it was major rejection before the IV pred or minor + cold. Still, minimal A1 is a as minor as it could possibly be so I guess that's good. My blows still aren't up to much so I'm sure the virus is having an effect too.

The treatment plan is to do around three more days of 30mg oral pred and then taper it off, and re-FOB me at some point to check the rejection is fully clear. Full details to follow at the ward round tomorrow morning. Hoping for a discharge in the morning.

Here's us by the pond. Nice day.

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Bronchage

2010-07-20T20:26:00.001+01:00

Had my bronch this afternoon and have been gently expectorating blood ever since, as is the way when they cut 5 bits out of your left lung. They didn't seem to give me as much sedation as sometimes as I felt the probe going in and heard the 'open' 'close' commands of the biopsies being taken and certainly felt the probe coming out.

Got a raised temp and heart rate of 110 for a while after the procedure bit that seems to have largely settled.

The doc said there was no sign of infection but my trachea was inflamed which could be down to aspiration of tummy juices from reflux - damn them, I need that fundoplication. I am genuinely quite annoyed if the waiting lists and doctors not getting organised and referring me to london if necessary is causing me lung damage already...! I'll have words with the doctor in the morning when I'm feeling less tired and woozy.

So, tomorrow evening I'll learn whether there is any rejection and that will dictate the treatment plan henceforth. I really just want to get back to feeling fit, going to the gym and being normal again.

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Rejection...or just a cold

2010-07-19T19:21:00.001+01:00

Interesting little chat with the doc: seems I came up positive for Rhinovirus, otherwise known as a cold. So it's possible, as rejection was never actually diagnosed by a bronch, that I just had an upper airway viral infection. Still, he's planning to follow through with the last steroid dose and bronch me tomorrow.

Seems also the steroids have pushed me borderline diabetic, as they can. I had a blood sugar of 19 this morning (normal 6 to 7) so they are going to test me every so often and give me insulin jabs if I go above 15. My pre-dinner test was 15.3 so they didn't treat it. Bit borderline. Apparently things usually, but not always, revert to ok once the steroids stop.

My hope is that I don't end up diabetic because of a steroid treatment I never really needed because all I had was a cold. That's the worst case scenario...

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What a nice setting for a hospital

2010-07-19T16:19:00.001+01:00

Just taking a brisk walk around the grounds and thought I should share what a lovely and unusual setting for a hospital Papworth has. It'll be a pity when it moves to the Addenbrookes site in Cambridge, but that's not till 2013 or maybe now even later with the state of the public finances...

Here's a view from the parkland with the big house on the left that's used for hosp admin and the pond, which you'll know well if you've been reading since I was transplanted, down to the right.

Here's the pond and the red brick building behind is Mallard ward where I was in the 3 weeks post surgery.

So guess I'd better get back to my room in case anyone wants me. I'll probably write again soon as there isn't much else to relieve the boredom!

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1 down, 2 to go

2010-07-19T09:03:00.001+01:00

I managed to get about six hours sleep, which isn't really any less than you'd expect from the first night in hospital with the unfamiliar bed and ward sounds (thank god for ear plugs!)

My blows this morning had shown a reversal and are back up to Saturday's level. If tomorrow is like Friday then we are definitely on the right track back to health...

I saw the docs and they confirmed they will do the three doses very probably and will do the FOB on Tuesday. So by Weds pm I'll know what level of rejection remains after the steroid treatment. After they stop the IVs they will switch me to a high dose of oral prednisilone (prob 60mg). The amount of rejection the FOB shows will dictate the speed that they taper off the oral steroids.

They moved me this morning from the ward to a room I can call my own. Room 13 Baron Ward.

Look - I get a little TV, a nice big window and even access onto the balcony where I can get just enough of a smidgen of mobile reception to send this post.

Onwards and upwards...

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The joy of steroids

2010-07-18T21:14:00.001+01:00

Well there was no change on the xray and no sign of infection in the blood test so they decided to start the methyl prednisilone IV. Three daily infusions of 700mg. Had my first this evening and no side effects other than a bit of a euphoric buzz and a funny bitter taste in the mouth. We will see how I go and I guess they will probably FOB me after the treatment to check the rejection has gone.

The other side effect of pred is lack of sleep so, combined with the noises of a hospital ward, I'm not expecting much tonight. Vicky brought me my laptop and the box set of the first series of the wire which I was wanting to re-watch anyway, so tonight may be a Wire marathon...

I'm standing outside the hospital writing this as I can only get phone reception outside so I'd better post it and get back to the waterproof sheets and hard pillows.

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Location:Papworth

Rejection?

2010-07-18T09:29:00.001+01:00

I went to Papworth on Friday as my lung function was down by a little under 10%. Enough for me to worry. They did a barrage of tests - X-ray, nasal vacuum tube thing (most unpleasant) to look for viruses, I tried to produce a sputum sample, some blood tests. They found a doc and he provisionally booked me in for a FOB on Thurs next week in case of rejection.

We went off to Norfolk to visit my mum and yesterday the blows had dropped again and today more so - they are 20% down now, and it is starting to hit my FVC as well as FEV1. Temp is fine, don't feel ill, still have 98/99% O2 at rest and pulse this morning was 58!

I rang the transplant doctor on call at Papworth and he's going to ring me back once he's spoken to the on-call consultant. He said it sounds like we need to start things sooner rather than later. Sounds like he thinks it is rejection.

Other possibilities: Upper airway infection - either viral or bacterial. Strange reaction to Azithromycin - I'm on this antibiotic to treat the re-emergence of campylorbacter and I'm just thinking that last time I had a dip in lung function and was almost FOB'd it may have coincided with the course of Azith following the original campylorbacter bout. Just my pet theory.

We will only know after they FOB me and at current pace of decline I'd rather that was soon!

Campylobacter....the return

2010-07-09T10:57:00.000+01:00

Over the last month or so I've never quite felt right in the guts - pretty much ever since the awful Campylobacter episode. I have felt bunged up, and then loose. It's not been very pretty. About a day every week I've had an unexplained slightly raised temperature, usually accompanied by tummy pain. I was wondering if it was just mis-management of Creon (the pill that digests food for me) and discussed it at length with the dietician at my CF annual review.

Eventually Vicky, being a very sensible wife, persuaded me to go to the GP and do another stool sample, just in case. I've just had a call saying that the campylobacter is still there. Well, that'll explain the symptoms then.

I rang Papworth and they said to use Azithromycin again as the antibiotic of choice, as the other two options can affect the immunosuppression levels. One of the side effects of the Azithromycin last time was really nasty tinnitus...so here goes with another 10 days of that.

The nurse at Papworth also said that she had a friend who had campylobacter and it kept on coming back. Not terribly reassuring!

Thou shalt stay away from building sites...

2010-07-09T08:31:00.007+01:00

... which is all very well until your next door neighbour decides to build an enormous extension. I, predictably, am anxious about the dust and the fungal spores and Will's lungs. We've talked to the neighbour and the builder and our letting agent and our landlord and everyone is being very decent and we've agreed working hours and basic principles and compensation etc etc. But nothing gets away from the fact that they are still pulling down walls and ceilings and dicking around with soil and rubble, right outside our kitchen door:

Our garden on the left, neighbour's on the right

So my plan was to keep the doors and windows on that side of the house closed pretty much throughout. This has been scuppered by the HEAT. Cambridge is a swirling mass of matching-backpack-clad foreign language students; as they mill and shriek their scantily-clad way around town, we locals sweat to and from work on our bicycles, crumpled and overdressed for the unseasonable weather. Oh to be 14 again. So I've had to relent on the kitchen door a couple of times - it is just too hot to be in there otherwise. Which means, of course, that I am back to being anxious about those spores... Hey ho...

CF Annual Review

2010-07-02T19:19:00.004+01:00

The way it works at Papworth hospital is that at the point of transplant you are handed over from the CF team to the transplant continuing care team. The CF crew have done all they can for those poor old scarred and clogged up lungs and once they are out of the picture, so to speak, it's more about looking after the new set and the Transplant team are the experts there.

There are, of course, the other aspects of CF: Digestion, possible onset of diabetes, liver disease, bone density and so on. To keep an eye on all of these bits the CF team continue with the annual reviews, where they do every test under the sun - a full annual MOT. Today I went for this year's.

Needless to say, my blows were a lot better than last year. A LOT. They produce a graph showing your % predicted (for your height, gender and age) FEV1 (1 second forced expired volume) from every CF clinic visit since records began, which for me is the last 15 years. That's quite a lot of data. It is actually remarkably interesting, especially if you're a bit of a spod like me, so I've copied it in below with some arrows to interesting events, and some explanation (click on the graph to enlarge):

So interesting things to note:

I never had above 50% FEV1 from the age of 20 (in 1995), until now!
The introduction of DNase is understandable when you look at the gradual decline over the previous two years
I used to really bounce straight back from infections - look at the first University one, and the Africa one - later on with the nasty infections I took a step down each time and never really got the lung function back. In the old days the antibiotics really worked - it was the infection hitting the lung function - clear the crap, suddenly you can breathe again. Later on the underlying lung damage was prevalent and didn't allow me to recover.
The Africa trip was a fabulous month of messing around in East Africa, and I thought the risk of not taking DNase with me (how do you keep it refrigerated when backpacking??) would be worth taking....er...no! I've never quite understood how I survived the flight home from Zanzibar - let's just say I don't remember much of it and was probably in a hypoxic stupor...
Starting the nebulised antibiotics gave me a lot of stability - see how the variation in lung function between visits is markedly reduced? It gave me a good 4-5 years extra time.
'Aint it just the coolest jump up in lung function at the end? 20% predicted to 90% in one hit!

So, go and sign up for the donor register, because this really works and a lot more people deserve to get transplants than currently do.

8 months

2010-06-23T12:52:00.000+01:00

Doesn't time just fly by? Before I know it it'll be a year...

At the 8 month point I am happy to report that all is going well. I've got over the recent bumps in the road (campylobacter, drop in lung function caused by mini-rejection possibly, cold) and in the last week have been feeling, well, energetic. I've joined the local gym, have been riding my bike, have table tennis coaching tomorrow, and yesterday set an all time record on my blows at home. I'm even going to try singing in a choir this weekend - I should manage to breathe for more than a couple of notes at a time now!

Had clinic this morning and the doc had nothing much to say. It's all good. They don't want to see me for another 2 months.

Well, what can I say? I am constantly amazed, surprised and taken aback by the way I can just breathe, get on with things and not have to think constantly about my lungs and how they are functioning. Slowly they are becoming just another part of me, doing their job as nature intended without conscious thought or effort, just like my heart, liver, or any other organ. I never really believed it could be quite this transformational - I expected a quality of life improvement but who would ever dare to dream it could just fix you so completely. No pain, little treatment, just living.

Long may it continue, and to the donor, whoever you were, if you are listening from somewhere, all the thanks in the world and then some. You've given me a fine old set of bellows. To the donor family....well, that is going to take some more thought, and it is about time I invested in that thought and put pen to paper.

100th post - how far we've come

2010-06-13T17:46:00.014+01:00

On Saturday morning Will and I went on a 10 mile cycle ride. We made a funny pair: Will was fully kitted up and riding his transplant-gift-to-self super fast racing bike (as he says - "all the gear, no idea") and I puffed along behind on my beautiful Cambridge-cliche Pashley Princess, which is built for ladies not for speed. Here are a few photos.

Mmm, a hot look I think you'll agree...

All I need is a terrier for the basket...

Later on, we did a bit of shopping in town and came back via the adrenalin-packed "Town and Country Fair" on Parker's Piece. While sipping half a pint of cider each and eating strawberries and cream in the sun, we read that Piper, a prolific and articulate blogger from New York, finally got her new lungs. She'd had something like 5 or 6 dry runs, including a 'damp run' where she got as far as being sedated before they decided the lungs weren't up to scratch. Something about the combination of Piper's great news, our morning cycle, the sunshine, and yes, perhaps the cider, brought me to the edge of tears, and I felt acutely aware of just how far we've come.

This time last year we were struggling to come to terms with the transplant idea at all. I've just been looking back at photos from last summer's holidays and remembering how much Will was struggling. He was determined, but just so compromised. Then we went through the unreality of being listed, the paradoxical hope that lungs would come soon but preferably not today or tomorrow, then the panic of the call and sheer other-worldliness of the surgery itself.

But then those first three weeks - the hardest days of all - and the first three months, which were only a little less hard. To start with, it was simply a question of getting through each day, trying to believe that when we went to bed we were one day closer to something better. I was scared most of the time and Will was in pain and not sleeping and on the edge of losing belief. Jim and Tori are about 3 weeks post-transplant now, and reading their posts reminds me of just how hard that time was. It really doesn't feel like there will ever be light at the end of the tunnel.

But there is light. To start with, there'd be tiny flashes every now and then. Then, around the 3 month mark, it was like someone switched on a light bulb. A pretty low wattage one to be fair, but light there suddenly was. That light grew slowly brighter over the next three months, but I was still scared. But yesterday, I realised that I am actually not that acutely scared anymore. It's taken nearly 8 months (and don't get me wrong, there will be more bumps and hard times, and I'm not blind to the challenges ahead), but... can I say this outloud?... not sure... I'll whisper it... I finally believe in these lungs.

It is a truly miraculous thing, organ donation. It really works! It gives life! Live Life Then Give Life! Yesterday, while I was gardening, I was listening to Will sing Schubert. We went to the gym together and he lifted weights and he ran and he rowed and he has muscles in his legs! After work today he played table tennis. There is so much out there to fit into the days. I wonder how Will's lungs feel about these activities - have they sung Lieder before? Are they missing clubbing or motorbiking or playing rugby? It's so poignant that the ultimate gift - the gift of life - is given with no conditions attached. The tragedy and generosity and wonder of that gift is incomprehensible.

This 100th post is sent out into the ether with gratitude, awe and an enormous virtual hug for those stuck in the transplant tunnel waiting for the signal to change.

An observation on a cold

2010-06-11T20:15:00.000+01:00

On Tuesday night as I lay waiting for sleep to come I felt a telltale tickle in my nose, and some soreness at the back of my throat. I realised I hadn't had a cold for well over a year by observing a strict regime of keeping the hell away from anyone who was sneezing. Sadly the observance of politeness in the work place had led to me sharing a meeting room and a handshake or three with a designer at an associate company who had an absolute streamer.

I was worried and also interested to see what would happen. Last time I had a cold, and every time before that for the last few years, due to the horrors of CF the cold had inevitably led to a chest infection, loss of voice, IV antibiotics and often a 2 week stay in the CF Unit at Papworth.

For Weds, Thurs and today and the nights in between I sneezed and blew, but weirdly felt like it was what I can only describe as a 'healthy illness' - kind of manageable in a way that a CF encumbered cold never was. I guess it is what normal folk would call 'mild'. This is all new to me.

So I continued to work hard and got through 4 days in the office this week for the first time since the transplant. And then, at about 3pm today I suddenly felt a lot better. So that's that. It is very heartening and great news that I can pick up a standard cold and get better, even with all the immunosuppression. Hooray.

Quick update

2010-06-08T18:45:00.000+01:00

Clinic today, to check up on my progress following last Thursday's FOB debacle. I noticed as I arrived this morning that I was on the list with "FOB?" next to my name, and then heard the receptionist confirming my bed on Duchess for the night. So I kept my fingers crossed that my blows would be spectacular enough to keep me out of hospital. I was reasonably confident, having had good numbers at home yesterday.

I got there pretty early so was 2nd on the Heart/Lung transplant clinic list. This means I got the usual X-ray, bloods and blows done quickly. The blows were good - better than ever in fact, although for some reason due to the technicality of peak flow and it dictating which numbers they record, the ones written down were the same as my previous best. The doctor was still a bit concerned about my Neoral levels, and will review today's bloods and let me know what, if anything, to change. If they are OK they will start tapering off the steroids at 5mg/week.

So I escaped the admission, with the proviso that they want to see me for bloods in a week, and back in clinic in two. All good though, really.

Busy day at work, now off to gym (!) courtesy of a friend who just joined and nominated me for a free week... I've had no staying power with gyms in the past, but hey, it's free so worth a go.

FOBbing 'eck!

2010-06-03T15:22:00.000+01:00

Well, that was certainly the shortest hospital admission I've ever had - in fact I wasn't even formally admitted.

I'd turned up to the transplant unit at 12:30 and after a short wait went into the treatment room and had a line put in my left arm, ready for the anti-sickness medication and sedation for the bronch and then for administration of any treatment needed. I then collected my notes and went over to Dutchess Ward with Vicky.

I sat on the bed, watched the end of Bargain Hunt and the start of the news, and a nurse came along with all the admission paperwork and a hospital gown, ready for the procedure. Then the doctor who I saw at clinic yesterday turned up and asked how I was doing - I reported that I was slightly better, my blows were up a little bit on Tuesday's numbers (but only a little bit - still a long way to go to get back to my best) and I was still running a bit of a temperature. He said he'd talked to Jas, whose opinion was that given the circumstances of the campylorbacter and the messing around with my immunosuppression that he would rather wait and see what happened in the next few days and see me in clinic again next week for a check up. The basic argument was that, yes, maybe it is a bit of mild rejection, but if it is bad then lung function will continue to deteriorate. As mine was stable, if not improving slightly, that was a good sign. Also, from a clinical perspective the treatment for the rejection would be increased steroids, and mine were already increased to 20mg. As of yesterday I have re-started the MMF and that will have an effect too, but will take 2-3 days to get the levels up in my blood and for things to stabilise. So, all in all he recommended I wait, and that it wasn't worth the risk of the procedure (which are small, but still exist - bleeding and even possibly pneumothorax/collapsed lung) since even if there was rejection it would likely be mild as I'm improving and there is no clouding on the X-Ray, and the treatment regime would be the same as I'm on already, if with a slightly higher steroid dose.

So he told the nurse to discharge me, which, since I hadn't yet been properly admitted just involved whipping the line out of my arm (removing a fair few hairs tearing off the just-applied sticky dressing) and waving goodbye.

I flippantly said in our conversation that "at least there is a bed free for someone else now", and the doc said that there was someone waiting...hastily adding that that wasn't the reason they'd decided not to FOB me...! So I reckon in truth it was a combination of the reasons above and a bit of medical triage - probably someone had come out of this morning's clinic with an urgent need for admission but they didn't have any beds.

On the plus side I get to enjoy a sunny weekend. On the downside I could get worse over the weekend, but I am hoping not and am feeling reasonably positive about getting better once I get the drug regime settled again. Onwards and upwards...

FOB time

2010-06-02T17:12:00.002+01:00

There are good parts and bad parts to my tale.

The good part is that once we'd got the diagnosis of campylobacter and started the appropriate antibiotics I started to feel better pretty quickly and now my gut is restored completely to normal. I also managed effortlessly to put back on the stone of weight I'd lost (about 6 kilos) during the week of eating basically nothing and losing everything very quickly out the back end. The weight gain phenomenon, getting back that whole stone in about a week, was helped along significantly by our old steroid friend, prednisilone. They whacked me up to 20mg a day while I am off the Micophenolate (MMF) to give me protection against rejection, and Vicky wrote in previous posts of the cravings and appetite it causes. It really is extraordinary - I can eat until my stomach physically hurts but I really won't feel full and will still look at food and quite fancy it. Somehow I crave the tastes, especially savoury, even when my body is saying 'no more!'. I am now so heavy I'm going to have to just accept I need to eat sensibly and be a bit hungry until I get the pred dose reduced again.

We had a very pleasant bank holiday weekend, with a lazy Saturday and then on Sunday went to meet my sister and her family, my mum and also some old family friends down in Southwold in Suffolk. It was blustery but basically bright, with the odd soaking rain shower. Fish and chips followed by a walk on the pier and round the town, and then back to Ellie's for vast (and I mean vast in my case) quantities of chilli. Vicky and I took mum home and stayed the night, and on Monday did some odd jobs for mum and took her for lunch by the sea. Mum is getting steadily worse with the Alzheimer's and spending 24 hours with her has the unfortunate effect of sucking any hope out of you and making you feel fairly desperate, not just about her condition and prospects but also about your own life. Misery is the overwhelming emotion for mum - it is intractable and insoluble. She knows it is all going wrong and she hates not being able to understand things and do things - making a cup of tea is a major effort and achievement for her now. I spent over an hour trying to explain to her how to turn on her alarm clock before she goes to sleep. It seems any logical construct, any instruction with more than one step is basically beyond her - so 'when you are in bed, you then press the button on top to turn the alarm on' is too much. On the one hand she realises she needs help, but then she massively resents any help given, especially from the professional carer who is now coming in every morning to check she's alright. Social services recommended twice a day, but we've started with once as we have to introduce these things slowly.

We left mum after lunch, with her in tears - the wrench of leaving, the guilt it engenders, is unbearable, but I have to protect my own life in its own precarious situation too. It has to be a balance of not feeling negligent to poor old mum, but trying to concentrate a bit selfishly on myself in this period of new life I've been given. It's tough, that's for sure.

We popped back to Ellie's on the way home and ended up staying for supper - far too much Chinese takeaway... Poor Ellie has been suffering awfully with the responsibility of mum too, and has been feeling very close to the edge. It really is for both of us to talk a lot and reassure each other we are not negligent and we are doing the right thing.

So to the bad. I awoke on Tuesday morning and felt a little off colour. I'd had a restless night and Vicky was saying my breathing didn't sound as relaxed when I was asleep. I took my temperature, which was raised again at 37.2 and then did my blows. I tried four times but just couldn't get the FEV1 or FVC up where they'd been last time I checked them on Sunday. It was just over a 10% drop, which is the magic number above which you are advised to call in to Papworth. Combined with the temperature I knew I had to call. So call I did, and they arranged to see me at clinic today. I went this morning and my blows weren't as bad as at home, but still about 10% lower than last clinic. I also had a bit of a sore throat. The doc couldn't see any changes to the X-ray, but they want to do a FOB (Fibre-optic bronchoscopy for those of you who haven't been paying attention...). I'm booked in to have the FOB tomorrow afternoon, subject to the availability of a bed. They will take some biopsies and analyse them for rejection, and will also grab some sputum out of the lungs and look for bacterial infection. If there is some acute rejection going on it will mean a course of IV prednisilone at high dose, which will send me fairly loopy (I don't think my appetite could possibly increase more, but maybe we'll see!). If is is a bug, then it'll be IV antibiotics. Obviously the best outcome will be neither, in which case it is probably a little viral infection and we just need to wait, but I need to know and it is best to be sure about the rejection.

One step forward, one step back. I am very much looking forward to getting back to some kind of stability, of the kind we were just starting to experience before I contracted the tummy bug. If nothing else I really need to get well enough to start exercising again or these Transplant Games in August will be a joke!

I'll update with the FOB results in a few days. Love to all.

Diagnosis and (hopefully) Murder!

2010-05-28T08:16:00.003+01:00

On Wednesday we headed up to Papworth. Jas felt the mycophenolate was probably the root cause of Will's problems. So, he told Will to stop taking it for 10 days, and to increase his prednisolone dose to 20mg per day (he is normally on 5mg) to give him more protection against rejection. He also stopped a couple of other things that are known to cause nausea or diarrhoea. He let Will come home, ostensibly because he'd be more comfortable at home, but really because there weren't any beds.

At 7 that evening the GP rang to say that he'd got another stool sample result back - it had cultured campylobacter. Campylobacter + compromised immune function = antibiotics. GP prescribed azithromycin, which Will happened to have a store of from pre-tx days, so he could start immediately. Being the anxious folk we are, we rang Papworth and spoke to the transplant doc on call (it was lovely Irish David, who was v nice to Will after his op when his heart was doing weird things) to confirm that they'd be happy with that.

And 36 hours later, Will seems to have turned a corner. He woke me up at 4 this morning to tell me he was desperate for a McBreakfast. I'm still laughing because Will is now showing all the signs that he's surfing a massive prednisolone wave. For those of you less familiar with the power (for good and evil) of these tiny white pills, they are renouned for causing insomina, ravenous apetite, euphoria and impulsive behaviour. The full story of Will's night made me laugh even more - apparently when he got up at 4am he joined the Cambridge Table Tennis Club... Yep really. He's also suddenly got a list of things he 'needs' to buy, top of the list being ... you guessed it ... a table tennis bat. He left the house at 7.30 this morning to get his much desired McBreakfast, and texted me shortly after to say it was delicious. He's on his way to Papworth now for more bloods to check electrolytes and kidney function.

So please all keep everything crossed that the antibiotics are doing their thing and the mean little campylobacter squiggles are wriggling in their death throes. Am feeling a bit vindicated by the stool sample result because I felt from the start that this bug was presenting in a completely different way to previous viral bouts he's had. But bacterial causes are very rare in this country, so I get why everyone assumed it was viral.

In other news, the table tennis elements of the last few hours aren't entirely random, they are on Will's mind because he's signing up to take part in the UK Transplant Games in August! We are off to Bath for a long weekend to live it up with sporty transplantees! Think I'm more excited than Will, but then I don't have to do anything, I just get to wear a t-shirt and cheer/cry a bit.

Poor Will...

2010-05-24T14:07:00.004+01:00

Apologies for venting rather a lot in my last post. What I didn't really say was that poor Will is suffering quite a lot with this bug. I think things are getting better, but MAN is the progress gradual. We have graduated from peppermint oil capsules for gut cramps (yes, I was sensing a whiff of sandals and patchouli too, but apparently there is good control trial evidence that these help) to codeine for cramps and to slow down the gut (made Will's mind go crazy, he was trying to poo out Dorothies in threes - shouldn't have let him watch the Over the Rainbow final on Saturday) and now we're trying immodium. We have to be very careful with this as the CF gut is prone to blockages. The worry now is that one of Will's immunosuppressants - the mycophenolate - may be contributing to the diarrhoea. You're not supposed to take it on an empty stomach and, although we're trying to get food into Will at the same time as taking it, it's probably not really enough. He certainly seems to feel worse after taking his hefty pill dose in the morning. We're also trying to get enough liquid and electrolytes into him, but dioralyte really is foul stuff and doesn't help the nausea.

Anyway, apparently Jas is now keen to see Will, but they are "chocka" at Papworth at the moment. So looks like we'll head to clinic on Thursday for a probable admission. I guess this would be to take him off the mycophenolate for a while in controlled conditions. I'm now slightly panicking - being told the consultant wants to see Will but can't cos there aren't any beds freaks me out rather. But rationally I guess they'd find a bed if it really was an emergency.

So, we plod (and poo) on. Can everyone send Will some healing and constipating vibes please...

Sunny Saturday ... in A&E...

2010-05-22T22:27:00.005+01:00

Hi folks, Vicky here. Yes, today we chose to celebrate the hottest day of the year by visiting Addenbrooke's Accident & Emergency department. Again. Will went down with another gastric bug on Wednesday. It didn't seem too bad to start with but turned out to be something of a grower. Still, we knew the deal this time, right? Stool sample on Thursday through the GP, a load of bloods on Friday, and by this morning things finally seemed to be improving a little. Then we got a call from our GP (on a Saturday - respect), who'd got some results back showing that Will's sodium levels were low. He recommended that we follow this up.

So, we call the out-of-hours folk and the doc says we could go to the hospital or we could stay at home and hope things improve. Um, thanks for that! Of course, Will says that he'll stay at home and hope he gets better. The stay at home option involves taking a hefty dose of codeine to slow down the bowel. This makes Will feel weird and dizzy and makes me feel just plain nervous. I go on a trek for dioralyte and marvel at the heaving crowds of exposed flesh - come on people, just cos it's sunny, it doesn't mean you suddenly look good in a boob tube... (or am I just mean spirited and jaded these days??)

So then it's three o'clock and Will's still in pain and struggling to keep stuff down and most of all I want to avoid A&E on the Saturday night after the first hot day of the year when many people will have been having just TOO MUCH FUN. (Yep, jaded, that's definitely what I am.) I talk things through with Will's sister (handily a GP - poor Ellie having to deal with my anxiety) and she feels we should go and get Will checked out in case the sodium has fallen lower. HOORAY - a decision.

We pack, we go, we're there in 10 minutes. I drop Will off at the door and park, I go in and within LITERALLY five minutes we are whisked away from a waiting room full of DIY- and outdoor-play-equipment-related minor injuries and are in a single room and someone has put a cannula in. Apparently, when it's sunny, they get up to 20 trampoline related injuries per day. Within an hour we've see a junior doc and within 2 we've seen the registrar. They pack in myriad tests (bloods x2, chest x-ray, urine, ECG) and decide that it's ok for Will to go home. YAY! His sodium is slightly higher than yesterday and they trust us to keep him hydrated and to come back if he doesn't continue to improve. The whole thing has taken less than four hours which, frankly, I think is pretty good, given that the doctors were fantastically thorough and engaged. The registrar remembered us from last time(!), the junior doc went through the discharge letter with us in detail, explaining what all the test results meant, plus everything was spotlessly clean... sorry - am I gushing here??

So here's the first thing. I think the NHS is amazing. I love it. The NHS provided world-class CF care for Will at Papworth, it paid for Will to get new lungs and it looks after his new lungs as if they were its own. We can rock up at A&E and be treated without anyone ever asking us if we have insurance. I know some people have less good experiences, and I know we are lucky to have both Papworth and Addenbrooke's on our doorstep, but I can't really get over how lucky we are not to have to worry about the cost of treatment on top of all the other things we worry about.

But here's the second thing. I still absolutely hate Will getting sick and I hate having to take him to the hospital. It's still frightening and stressful. My anxiety levels are generally better than they were, and I really didn't panic too much this time, but I still hate all the testing. Who knows what joyous new weirdness they may pick up. A little abnormal heart tracing sir? Would madam like the low blood pressure today or the high? Which obscure little abnormal measure tickles your fancy? And it's still four hours spent in a tiny room with no windows, waiting for people to come and ask the same questions again or for people who say "I'll be back to do that in just two seconds" but don't appear again for an hour. Four hours that I, in all honesty, am tempted to resent not having spent out in the sun having too much fun, cos then I could be in A&E right now, pink as a lobster and drunk as a skunk.

Loads of love to you all, especially to Jim Fahr in the US who got his new lungs on Wednesday, and to his wife Denise. Jim's been having his own gastric issues following his operation but hopefully both he and Will are now on the mend.

clinic update

2010-05-15T09:06:00.000+01:00

Had clinic on Thursday and my lung function numbers confirmed something odd that happened between Monday and Tuesday earlier this week - I somehow discovered an extra 300ml of vital capacity, and a bit more FEV1. This has happened a couple of times since the transplant, and each time it's been preceeded by a creaking feeling between my lungs and the chest wall, as if I am muscularly learning to yank out an extra bit of chest a bit further. After the creaking stops, the lung function goes up step-wise.

So my numbers are now just over 100% predicted for FVC, and around 90% for FEV1. Pretty happy with that!

the experience continues

2010-05-10T15:49:00.000+01:00

It is 2am. I am lying on my back in the anaesthetics room, wearing my operative gown. There are five or six people in the room including two anesthetists and a few nurses. They say they are going to put an arterial line into my arm. I'm fairly relaxed - the mild sedation is keeping me so - but I remember the many arterial blood gas tests I've had over the last few years and know I am in for some pain. It is much harder to access an artery than a vein - when the artery is stabbed it collapses, then gradually relaxes, so the needle has to be held in place for a while until it opens up and the line can be inserted. Also, the artery is deeper in the arm than the veins, so there is some digging to be done...

Ann is still with me, and asking me questions about family and where people are. While we chat the anesthetist who came to see me in the ward has a go at the arterial line, near my left wrist. It is painful and unsuccessful, after quite a while prodding around inside my arm to try and find the artery. He has another go, a bit higher up my arm - again he can't get the line in. It's a bit of a mess now. "Having a bit of trouble?" I say, cheerily. I realise this is probably not helpful. He calls over his colleague, who I feel is probably his superior, and he finally gets the line in about half way between my left wrist and elbow on the inside of my arm.

The last thing I remember is telling Ann that Vicky's dad is in South Africa on holiday, and then everything is gone...

...I am conscious. I hear words: "you've had a transplant".
"oh, ok. I must be alive. I must have made it. This is going to be unpleasant...I guess I am intubated..." and as my senses begin to kick in, I search around for the sensation "yep, there it is, tube in my mouth. Just breathe"...

...I fight the ventilator. I try and breathe at my own rhythm. I'm choking. "Breathe with the machine" says a voice. I try to relax, to breathe in when it pushes in the air. I get the hang of it...

...There are people in the room. I can hear Vicky and Ellie. I try to open my eyes and there they all are standing at the foot of my bed. My eyelids are leaden, and I can't hold them open for long - against my best effort they close again...

...I open my eyes again. Mum and Dad are there too. As I open my eyes people react - they smile, they point, they go "ooo!". I find this hilarious, and try it a few more times to get the same response...

...I am still finding it hard to breathe with the ventilator. They say they will take the tube out. They pull it out and replace it with oxygen through a mask - it is loud and high flow. "breathe, breathe" I think. I struggle. "Relax"...

...I am awake. I can take stock of my surroundings, in the weird half light of intensive care. There are no windows, except one on the opposite wall of the single room to me, but it only looks out onto the rest of the ward. As I gradually become more and more aware I notice all the tubes, all the machines around me, I notice the catheter for urine. I notice the chest drains - four fat tubes coming out of my chest wall, draining light red fluid into pots on the floor. I notice the nurses, who change every eight hours or so. One in particular is very kind. They take blood out of one of my tubes every hour and instantly run off results of levels, then tweak various infusion pumps to keep me stable.

I start to notice pain. The nurses need to clean me, and this means moving onto my side so they can scrub my back and bottom. The effort required to do this and the pain are extraordinary.

Time passes in a blur. I start to drink fluids. The oxygen is changed to a nose peg. I get some sleep.

A doctor comes in and advises about chest drains and when they might come out. People come with a portable X-ray machine - I have to sit up, which is agony.

After a couple of days Jas arrives and does a bronchoscopy to have a look around and hoover out some sputum. I am encouraged to cough and bring up the sputum - they give me a rolled-up towel and tell me to squeeze it to my chest as I cough - it feels like my sternum is tearing open with each cough, it brings me to tears.

I get out of bed and into a chair. I have so much pain it is close to unbearable. I want to get back into the bed but the nurse can not move me on her own, and can not get help. It is the worst day so far. Eventually I get back into bed and an epidural is arranged. Having the epidural I sit on the edge of the bed and lean forward, the nice nurse comforting me as the anaesthetist takes three attempts to get the epidural in the right place. Eventually it is done and the pain is relieved. They check the numbness by rubbing ice on my chest and asking me if I can feel it.

A bed comes free in the ward and, a day later than originally planned, I am wheeled through with all my tubes and machines. On the ward the noises of all the other machines filter into my dreams and my mind creates hugely complex compositions around the rhythms of the ward. I think that I wish I could somehow record the music, write it down - I had no idea my brain could come up with this stuff. I have gory dreams of tubes, gristle and blood, I see ants and cockroaches crawling around a scene of viscera. I have trouble sleeping.

Gradually life becomes more normal and less dreamlike. My drains are taken out, two at first, and then the other two. The catheter is taken out, which hurts like hell. All of these are done with gas and air, and I get to quite like the old nitrous. I make my first blog post, at 19:26 on Monday 26th October 2009, three days after the operation. The rest is history

Postscript: Sorry about the delay to part 2 of the transplant experience. We have been away on a lovely holiday on Exmoor, with some good walks up and down hills and along cliff paths, plus plenty of cream teas!

Looking back from 6 months out

2010-04-24T10:56:00.003+01:00

Six months ago today, on the 23rd October, I was under the knife in the theatre at Papworth. In fact, around the time I'm writing this, 10:20am, I must have been pretty close to done as I was out of theatre by 11. I thought it would be a good time today to look back six months to the night of Thursday 22nd October, just before midnight, and to let you know how it all unfolded. I've never posted about the experience of the call, so I guess we're about to see how much I can remember... At the end of the first week in hospital I wrote, with a very shaky hand and unfocused eyes, a few scribbled notes to try and help me remember that time.

I'm awoken from a deep, ventilator-aided sleep, by the phone ringing. It's 11:50pm. It's one of those moments where the sound is incorporated in a complicated way into my dream and by the time I realise I'm awake and it is real, and I have wrestled the ventilator mask off my face, the phone has gone to answerphone. I'm hit by a wrecking ball of disbelief - it can't be yet, it's too soon - then - my mobile's going to ring in a second. I've been keeping my mobile charged and by my bed for the last 11 weeks in preparation for this impending call, and sure enough it starts ringing. I'm in the spare bedroom as I was having trouble sleeping in the harder main bed, and by this time I can hear Vicky is up and moving next door. "Oh God" I say out loud as the phone rings. Vicky rushes in "Oh God" she says. In blind panic I answer the phone and say "hello?" with a shaky voice. "Hello Will, it's Anne here from Papworth, the transplant coordinator. As you've probably guessed the reason I'm ringing is we have some lungs and need to get you here as soon as possible".

Once the call is over I start to really panic. It feels too soon, I don't know if I'm ready. Thoughts rush through my head and the one that seems to stick is "I could be dead in a few hours". I feel so alive now, struggling, yes, but alive - am I ready to take on that 10% risk of not making it through the operation?

Vicky tries to calm me down, to stem the floods of tears. We hug, exchange soft words, strong words, hold on tight. I ring Ellie, my sister, and tell her it is happening - we've arranged that she'll be able to drop everything and drive to Papworth to be with Vicky overnight. She tells me it'll all be ok, how much she loves me, and I just can't stop crying. I then ring my mum and my dad in quick succession. Dad will pick up mum in the morning and bring her to the hospital. They should be there when I get out of the operation.

Anne rings back from Papworth and says they can't sort out a taxi for me, and don't send ambulances - if we feel we can drive we should do that, otherwise get our own taxi. Vicky insists she's ok to drive and we get into our old blue Golf, simply because it is nearer to the house than the other car. During the journey I try to stay calm, try to get a grip on reality and get over the surreality of the situation. Am I really going to do this? Am I really going to let them cut me open and take out these lungs that I've fought with for 35 years?

We get to Papworth. It is very quiet, very dark, and we find our way to the back entrance we've been directed to over the phone. Vicky's carrying my bag with my essential clothes and drugs. I'm wearing my oxygen, carrying 'the monkey' - my portable oxygen concentrator. The door is locked. I ring Anne and she comes down to let us in. It's ten to one in the morning.

Moving through the silent corridors we whisper in conversation, talking about what's going to happen, where we are going, how things are with the donor lungs. They are looking good. We need to move fast. We arrive at Mallard Ward - I've never been to this part of the hospital before and it is all unfamiliar. In the darkness wink the lights of the monitors over each bed, keeping tabs on the sleeping patients. We are led into a ward bay with 6 beds, into the corner where there is an empty bed. We continue to whisper so as not to wake the sleeping patients. The curtain is drawn around the bed and we turn on the night light. In this strange, subdued half-light I am told that everything is looking really good, but we need to move really fast. Things are hotting up. Anne talks to us gently and asks me if I want to go ahead. This is the last chance to get out of this strange world and wake up tomorrow morning with nothing changed, with a ventilator mask on my face, with clogged up lungs, but with familiarity. I try to imagine how I'd feel if I said no, if I rejected this chance that may have come too soon but never got another chance. Of course I'll say yes.

A doctor comes to see me, goes through the consent form for the operation. He outlines the risks again and I think, really? now? is that entirely necessary? I've been told the risks and percentages several times before but there they are, in scrawled doctor handwriting on the form - survival for operation, 3 months, 1 year, 5 years. "Just sign here...simples!" he says, with almost a giggle at his own joke impersonating a stuffed character from an advert for car insurance. It seems so completely out of kilter with the seriousness of the situation, but to laugh somehow cuts through the veil of unreality and I relax a bit. I start to take on a sanguine attitude - whatever happens will happen, if I don't make it I won't know anything about it, being anaesthetised isn't like sleep, there's no perception of the passing of time, no dreaming, I'll just switch off and either wake up on a ventilator in ICU or just won't.

Bloods are taken. A male nurse takes me to a bathroom and hastily shaves my chest. I urinate. There is no time for a shower, no time to disinfect me and scrub me down. I am changed into a gown. I walk back to the bed and take my first dose of immunosuppression and some sedative medication. Anne arrives with a wheelchair - "we've got to get going - there are lots of people waiting for you". It's strange, I feel special and wanted - all these doctors and nurses roused from their beds as the call came through, so much action, unbelievable levels or organisation, cogs turning and donor lungs being assessed and removed. Vicky walks alongside as I'm wheeled out of the ward and through towards theatre.

It's the point of no return. I can see the anaesthetic room, people busily moving around, preparing. "All this for me" I think again, and feel privileged and strangely at peace. Vicky can't go any further. Anne leaves us and we talk for what is probably only two minutes. "See you on the other side", "love you so much", "you'll be ok". I even say what music I want at my funeral. Anne returns and says Ellie has just arrived, but there is no time, I can't see her. Vicky goes one way, to meet Ellie and to try and cope with the night and the wait. I go the other way into the cold, bright lights of the anaesthesia room, onto the preparation trolley, towards my fate.

to be continued...

I walked right up to the top of the hill...

2010-04-09T18:17:00.003+01:00

...and I walked back down again.

OK, so the hill wasn't big by international standards, neither was it anything significant like Ben Nevis or Snowdon (although Snowdon is in my sights for the summer), but it was a nice, peaky hill...in the Peak District.

We went away for the weekend a couple of weeks ago and stayed in Ashbourne, just to the south of the Peak District National Park. The very first weekend away Vicky and I ever had was to the Peak District, around the same time of year, so it felt fitting to return with a new pair of lungs to test out. We were blessed with clear and beautiful weather, if a bit breezy and chilly, and on Saturday we went to Dovedale and had a good walk.

As I'm sure some of you know Dovedale is pretty touristy, very beautiful, and has a hill called Thorpe Cloud. Last time I climbed Thorpe Cloud was four years ago during that first weekend away, so I had to make a comparison and get up there again. As it happened we ended up doing a rather longer walk after we came down again, along Dovedale and then up the other side of the valley and along the top. Needless to say it was easier than last time getting up the hills, and a joy to be able to do a 6 hour walk and still feel human at the end.

Here are some pics:

So, here I am at the top of Thorpe Cloud - the route up is down to the right of the pic. Steep.

It was pretty windy up there!

And you could look over the edge down into Dovedale.

Here's Vicky helpfully showing us all the route we came down. Nice pointing Vic.

We were up there!

So then we walked along the river down the dale, and went up the side of the valley through some muddy woods. When we came out on top we could see this:

There's Thorpe Cloud over at the end. Dovedale is down in the valley below the trees.

We carried on our walk, through a farm. Look at the sweet animals!

It's a cow! Like those ones on the highland toffee wrappers! It was almost ridiculously docile.

It's a sheep and a little lamb! Wow, this is pretty exciting isn't it? The sheep still had some afterbirth hanging out its back end (sorry to be nature-gory there), so the lamb must have been very recently born. It was having trouble standing up and wobbled and fell over a few times. It also instincitively knew it was after milk, but couldn't quite find the teat - mum was nudging it in the right direction with her head. Once locked on to the teat the little lambkin's tail started doing wild wiggles and helicoptering - it was obviously enjoying it!

We eventually got to the top of another hill over the dale from Thorpe Cloud. We then made our way down by a slightly unorthodox route involving scrambling and holding onto fences to stop falling, trying to avoid the barbed wire. Still, we made it back to the car.

The next day we went to Chatsworth, which is a frankly stupidly massive stately home still privately owned by the Duke of Devonshire. It 'aint small

The place is full of greek/roman-esque statues. I'll leave you today with an arty shot of a statue's bum, courtesy of my lovely wife.

Oh, and a belated happy Easter to everyone!

A letter to myself

2010-03-23T19:40:00.004Z

Dear Vicky on 23rd March 2006,

You won’t believe it, but tonight you are going to meet your husband and your flirtation with internet dating as a way to entertain yourself and broaden your social circle will get you more than you bargained for. When you meet Will, he’s a little shorter than you expect. You'll note his not-entirely-blemish-free skin, his poo-brown t-shirt, a slight husk to his voice, a bit of a cough. He’s had a cold, he says. He apologises for yawning and you’ll decided not to be offended. When it’s time for that important second drink, you’ll realise you’re enjoying yourself; you’ll realise that this guy is easy to be with and interesting to talk to. You’ll get pulled in by the twinkle in his crinkly smiley eyes and the way that he seems entirely at ease with himself. You’ll agree to meet again and go home feeling cheerful.

In the middle of your second date you’ll decide you could fall in love with this person. I can still remember the happiness and peace of that exact moment. You’ll go on other dates and quickly begin to feel like a couple. It’s exciting, but occasionally a little puzzling. Sometimes it seems like Will holds back a little, and why isn’t he desperate to spend the night? You’ll hold him close, feel his heart beating fast and feel (wrongly) flattered. You’ll tell him he’s too good to be true and he won’t quite meet your gaze.

Three weeks in he’ll have a 4am coughing fit and you’ll ask where it came from. He’ll think about trying to gloss over it, but decide against it. Slowly, he’ll tell you that his lungs are buggered; that he has a genetic condition called cystic fibrosis. He’ll tell you it sounds scary when you don’t know anything about it. How I wish that were true, and that it didn’t get scarier the more you knew. You’ll think of programmes you’ve watched about little children with CF and assume out loud that he must have it mildly. “I’m doing ok”, he’ll say.

As the next days pass, slightly numb through lack of sleep and shock, you’ll realize that if you’re going to get out of this, you need to get out now. You’ll worry that staying would be weak – putting your short-term pleasure over your long-term future – but you can’t imagine walking away from Will. He already feels like part of you, part of your family, part of your past and present and future. You run with it; it’s not a choice as such, more of an instinct. You’ll be worried but you’ll also be the happiest you’ve ever been. You’ll introduce him to your family and friends (hoping for no errant coughing fits) and it will all be so easy.

As you get to know Will, and he shares more with you, you’ll get to know CF too. You’ll decide early on to learn through Will rather than the internet. So you’ll get used to the morning treatment regime, the creon at meal times (how did you not notice him taking them before?), the coughing and the evening tiredness. It’s not that he was lying about the cold on that first date, just that it was a handy excuse for things that are in fact always there. You’ll spend more and more time together and talk of living together. You’ll panic because you need to tell your parents about CF. Don’t worry – they turn out to be unquestioningly supportive and wonderful; they’ve got to know Will a little and they love him already. I remain overwhelmingly grateful to them for this reaction.

Your first year together will be pretty CF-free; it’s there but it’s not too worrying and there are no big infections. You'll climb hills together, fly kites, have some fabulous holidays and get used to Will needing to be in bed by 10pm. During the second year, now sharing a sweet little Victorian terraced house, he won’t seem quite so well. You’ll experience your first IV antibiotic round, then another and another. You’ll climb a hill together on a Greek Island and he will ask you to marry him. In a way, with all the excitement, you’ll not notice the subtle deterioration in his exercise tolerance and energy levels. You are so happy. Then comes the first hospital admission, which never quite delivers the lung function bounce you were expecting. Soon after, the doctors will want to introduce the overnight ventilator. After an initial panic you’ll decide to embrace this addition to your nights – a sensible decision – and you’ll soon be almost fond of it. It’s a hard few months, but it means you'll begin your marriage with your eyes as open as your heart.

So today, four years to the day after we met, I look back on that first date. I now know that Will’s quite tall for someone of his age with CF. Post-transplant, he skin is perfectly blemish free, the husk isn’t really there and neither is the cough, but he does still own (and wear) the poo-brown t-shirt. I wonder about that early instinct not to run for the hills. Knowing what I know now, I wouldn’t judge myself (or anyone else) for running. The fight against CF and the slow descent towards transplant is very very hard. My life has grown into something I could never have imagined; the fairy tales didn’t prepare me for it. But I equally never expected to love someone as completely as I do; to LIKE someone EVERYDAY as much as I do; to be as full-to-bursting proud of my husband as I am. Although I’d rather Will didn’t have CF, he wouldn’t be him without it. He wouldn’t be as open-minded and kind and honest and thoughtful and compassionate and humble and brave and determined and frankly bloody amazing, and so I cannot wish it away. The bottom line, in my mind, is that when you love someone, you just love them and you can only really get on with loving them, whatever direction that takes you. Walking away from love would be almost arrogant – to assume that something so precious would cross your path again. I’m not a saint, the worry gets me down and I am not always brave, but I am in love and I am happy and I cannot hope for more than that.

With love, thanks and respect,

Vicky on 23rd March 2010

p.s. There will be times when it will really help you to know that tonight, as I post this, Will is making pasta. I don't mean boiling water plus pan, I mean flour plus egg plus a load of kneading. Talk about energy levels.

Spring has sprung

2010-03-22T16:10:00.006Z

The other evening I was wandering around Cambridge, waiting for Vicky to finish work so that we could meet for dinner, and I went to have a walk by the river and walked through my old college, Trinity. It was a beautiful evening, with the crocuses out on the avenue, and it reminded me again how it is so easy to forget what a stunning place Cambridge is and how we take living in this town for granted. I was struck by the peace of the place, especially when wandering through the courts of the college, and how it is just such a conducive atmosphere for thinking and study. Except, of course, when you are actually there you spend most of your time trying to avoid study, having too much fun or wrapped up in the petty worries of everyday life...

I snapped a few shots on my phone, so the quality isn't great, but I hope it shows spring has at last sprung in Cambridge.

Crocuses on the Avenue in Trinity College

Looking the other way, with the college library (Wren library) through the trees

Trinity college bridge over the river Cam. A classic view.

Learning to be normal

2010-03-16T13:56:00.010Z

Well, all we really got from that clinic appointment was information we basically already knew and a big dose of reassurance, although that reassurance did have to be squeezed out of the doctor and nursing team with a series of questions and slight rants about our experience of the primary care NHS.

The thing is that in the past the most likely common illness I'd get would be a cold, and if I got a cold I'd be sure to get a nasty chest infection, and if I got a nasty chest infection I'd ring up Angie on the CF team at Papworth and she'd say 'come in and have IVs'. Simple. One person to call, immediate action; in hospital where you need to be, being pumped full of noxious antibiotics. Back then if I'd got a tummy bug I would have just waited for it to go away like everyone else. In the new post-tx situation if I get a cold I will more than likely be fine and won't get a chest infection, much like most people. It might take longer to fight off the cold, but I should be ok. If I get any other illness not directly connected with lungs the Papworth team really aren't interested - it's a job for the GP or local hospital, and that means the route we took this time - the out of hours GP service or A&E.

This is all in principle fine, but when you turn up and tell them you've had a bilateral lung transplant they, being intelligent doctors, get all interested and then, when they take a chest x-ray which makes it look like you have pneumonia, get worried and it is up to me and Vicky to feed them all the information. Of course they can phone a doctor at Papworth, but initially it is frustrating. They talk of administering antibiotics, but shouldn't we be checking with the Papworth team in case of allergies, or interfering somehow with the lungs?? I really wish they would hurry up with computerisation and networking of all your notes so docs have this info to hand. We got, as I expect a lot of you did, a thing through the post recently about the process of the NHS starting this with the summary record, but it would also be great if, for example, past X-rays were easily accessible by any doctor from any hospital.

Anyway, I'm getting off track. The upshot of clinic was that they did another ECG, it showed the same slight strangeness and even the cardiology consultant at Papworth couldn't work out what was going on. They don't seem too worried as the Echo was ok, so they will just monitor it. My lungs sounded ok and the X-ray from Saturday was ok (they got that sent over from Addies - so there is a system but you have to ring the radiology team and ask them to send it over, not possible at 3am on Saturday morning...) When I asked when they'd like to see me next they initially said 2-3 months and Vicky and I both exclaimed 'what??!' in unison, in comically high voices, since up to now we'd been on 3 weeks and I'd just been ill. It seems someone had written in last time's notes 3-4 months when they meant 3-4 weeks. So they then said 4-6 weeks. We went for a month to be safe.

So to the title of the post ' learning to be normal'. The general impression we got of the clinic was that their attitude was remarkably relaxed. "It doesn't matter if you miss the odd dose of immunosuppression (although we don't tell people that) - you aren't going to immediately start rejecting." "The first 3 months are the risky period, if the 3-month biopsy is clear of rejection it is much less likely things will start suddenly rejecting". Essentially they want you to start living your life and get on with things, and not have to be coming to Papworth all the time. If you get a common illness, you'll probably get better, and you can always call them, but go to the GP first as standard antibiotics will be fine. This is all terribly new, and a bit difficult to adjust to!

Part of the reason there was so much anxiety flowing around this time was that it was the first time I'd been ill post-tx. Next time we will know what to expect, what I can handle and how to work the GP/Addenbrookes system. Eventually we will learn to trust it will all be ok and learn to live life a bit more normally.

A bit of a blip

2010-03-15T18:01:00.002Z

...and hopefully just a blip. I awoke on Friday morning with stomach ache which, after breakfast, developed very quickly into what they call in the trade 'D&V', that is diarrhoea and vomiting. It very quickly knocked me completely for six and I was stuck in bed needing all my willpower to haul myself to the toilet every 20 minutes or so. My temperature by the afternoon was running at 38.8deg C (101.8 F) and both I and especially poor old Vicky were starting to get quite worried. Vicky rang the Papworth team and they said they wouldn't usually do anything until 24 hours had passed - they are not especially keen to have anyone admitted with D&V unless absolutely necessary as they don't want to introduce these kind of infections into the hospital if they can avoid it. Vicky ended up ringing twice and the second time spoke to the transplant doctor on call who basically just said if it is still bad after 24 hours, or if you feel you need to, go to A&E at Addenbrookes. Great, we thought, I can barely move and the prospect of waiting for hours in A&E on a Friday night with the usual selection of drunks doesn't sound great.

A bit later, Vicky called my sister, Ellie, who is a GP and she recommended going to the out of hours GP service as they should be able to fast track you through A&E if we needed to go. So we managed, just, to get out to Chesterton on the edge of Cambridge and wait to see a very nice GP. She was just about to send us back home, since the vomiting had stopped and the trips to the toilet were getting less frequent, but then took my blood pressure which was low at 95/60. This was likely a combination of dehydration and the ramipril anti high blood pressure pills I take. So she recommended we go to Addenbrookes A&E after all and get some IV fluids into me.

So to Addies (as we know it). By the time we saw a doctor in A&E it was 1:30 in the morning. They did a load of bloods, an X-ray of chest and stomach, an ECG of the heart and a physical examination. At one point we overheard the doctors discussing my X-ray and one saying it looked like I had pneumonia, but the other saying that he didn't hear anything in my chest when he had a listen. This confusion was cleared up when I explained I had the fluid perfusion around the right lung post-op that was still hanging around, so that would explain the shadow on the X-ray. They put a cannula in and got me on IV fluids, and decided to admit me to a ward for the night, which took a bit of time as they needed to find a side-room so I was isolated and could be barrier nursed because of the D&V.

By 3am we were installed on ward M4 in quite a nice new big room with bathroom and a big window over the back of the site, out over fields. A great deal better than that awful side room in Papworth you may remember me describing a few months ago! Vicky went home at 4am and I tried to get some sleep.

A doctor who looked classically doctor-y came by in the morning, Professor Carmichael, wearing a bow tie (surely only doctors can continue to get away with this sartorially challenging move?). He had concerns about my ECG which showed some oddities. So he wanted that repeated, as well as a stool sample done. Once those were in the bag (as it were) he came back and had an extended and extremely careful listen to my heart, thought he could hear some slight 'rubbing' and arranged for an echo to be done, which is an ultrasound of the heart. He himself pushed me in a wheelchair the not inconsiderable distance to the Echo room where he left me with a young cardiologist to do the scan. The cardiologist said it was the first time he had met the legendary and 'incredibly intelligent' Prof. Carmichael and sounded slightly in awe of him. This probably explains why he pushed me to the echo room - once you get to a certain level of importance you feel able to do that without the insecurity that it would somehow jeopardise your authority...

The echo was a little uncomfortable as the probe seemed to have to be positioned right on my scar most of the time and pressed quite hard. Still, the cardiologist said he couldn't see anything untoward and couldn't really explain the odd ECG traces. There might be some slight thickening of the right ventricle (right ventricular hypertrophy) but that's really to be expected from a heart chamber that has spent years trying to pump blood into heavily diseased lungs. The poor old heart had to work really hard for a number of years.

Eventually then, at 8pm on Saturday evening, I was discharged and we came home. My CRP from the blood tests was high, and higher than normal for a viral infection, so the docs suspected a bacterial infection. However, I remember the Papworth crew saying before that the immunosuppression can raise the CRP, so it may still have been viral. They will only know for sure when the stool sample results come back and that takes a few days. Now I am a lot better, the bowels are still pretty dodgy and my appetite isn't great, but I think I'm getting there. I do feel that my chest is a tiny bit rattly when I breathe in fast, and that's a bit worrying, but I have my Papworth clinic appointment tomorrow, so I should be able to discuss all that's happened with Jas. They'll get another X-ray and have a listen to my chest and I guess if it seems there is something awry they might admit me for some IV antibiotics. Also I hope they will do another ECG and get the Echo results from Addies and make sense of all this heart stuff, which never would have turned up if it wasn't for the fact that A&E routinely do ECGs on people since I don't normally have them at Papworth.

A very stressful few days, especially for Vicky, so if any of her friends or family read this please do give her a call as she is so rubbish at asking for support when she needs it. I guess we should admit to ourselves that episodes like this are bound to happen however hard you try to avoid them, especially when your immune system is suppressed. It's interesting to note that Vicky, with a fully functioning immune system, thought she maybe had a very slight bit of diarrhoea yesterday and that might have been the sum total of her version of the symptoms.

I'll report on developments after clinic tomorrow.

Are they just having fun with words?

2010-03-09T09:22:00.004Z

Sometimes you wonder if the medical profession has a serious dose of tongue in cheek when they name things. Both drug names and, it seems, surgical procedures often have ridiculous names. Perhaps it is to maintain a sense of mystique and exclusivity, to allow doctors to talk to each other without the patient understanding, or maybe it's just a laugh...

For example, the official name for the operation I am due to have is a Laproscopic Nissen Fundoplication. Fundoplication?? What? That's so much a made-up silly word.

For those of you interested in what it involves I found a video of the procedure online: Here

Looks to be...er...fun! Nice stomach wrapping technique.

It has left me in a bit of a slough of despond for the last few days anticipating this procedure. The things that I found hardest post transplant were the pain and discomfort, but also the sickness and problems swallowing. To be faced with another operation that will give me some pain (but obviously a lot less and less long lasting) but then a big dose of sickness and problems swallowing is just such a depressing prospect. I know that it is for the best in the long term and it will keep me alive for longer but I feel so settled and normal now and don't want that taken away.

Ah well. I shall await the letters from Addenbrookes - initially it will be an endoscopy to have a good look around (within March) and then the op in a 2-3 month time frame.

On a happier note we had a great weekend in Oxfordshire, visiting Vicky's mum and sister. Sunday was a glorious, sunny day and we went for a walk in the Chiltern Hills for about an hour and a half - I expect Vicky will upload some photos sometime.

A tightening of the sphincter...

2010-03-04T11:59:00.003Z

...no, not that one...the one at the top of the stomach.

It's been confirmed today, at the second clinic appointment in two days, that I do need the operation to tighten up the sphincter/valve arrangement at the bottom of the oesophagus/top of the stomach. You'll remember that I had an oesophageal manometry and Ph study a while ago, and the results are in. They score the whole study using a number of factors, where anything less than about 14 is normal, they worry if the score gets to 20, and mine is 41. So yesterday at my scheduled clinic appointment Jas said that I should have the op, and could I come back today for a joint clinic with the gastro doctor from Addenbrookes (big hospital in Cambridge). By the way, my PFTs were further improved at yesterday's clinic which is great. Things are looking good with the lungs so far.

So Vicky and I trogged back to Papworth this morning and met with a room full of doctors and nurses. The consultant from Addenbrookes led the discussion and outlined the results of my ph study in more detail. They test for the sequential contraction of the muscles lining the oesophagus, to check the swallowing thing is working well, and that was ok for me. They then test the strength of the sphincter muscles, and mine was on the weak side of normal. The acid readings, however, were way up and there was lots of reflux recorded. I take omeprazole to control the production of stomach acid so generally this is kept under control. The test is done without omeprazole to help show up the reflux, but they say that even with the omeprazole the reflux will still be happening, even though you may not notice it. The acid and enzymes that come up are then breathed into the lungs in vapour form and do their damage. There is strong evidence that patients with reflux correlate with those who have the early onset of OB (bronchiolitis obliterans), which is the main symptom of chronic rejection.

The doctor said that I ticked all the boxes for the op. People who respond well to omeprazole (like me) tend to respond better to the operation. The swallowing muscles need to work well to push the food through the tightened sphincter, and mine are ok. The downsides of the operation are that for 4-6 weeks post op the diet is 'slops' - so lots of soups and easy to swallow foods. Things get better as the inflammation from the operation subsides. (Side note: Anyone with inventive and tasty recipes for sloppy foods please let me know!). As a result of the tightening it is basically impossible to vomit and very difficult to burp. This means a fizzy drink ban (to a Coke lover like myself this is particularly harsh!) and an increased propensity to pass wind as you can't burp the gas up...

So, some down sides but these have to be balanced with the long-term survival benefit. Basically it is a no-brainer when you think - just a real pain to have to go through another procedure just when I feel like I'm on an even keel and Vicky and I are starting to enjoy life. I guess it will be a lot less traumatic than the last operation - it is just keyhole surgery and a couple of days in hospital after all. The tightening is done by wrapping a bit of the stomach around the bottom of the oesophagus.

Other than the anticipation of all that, everything is going very well. I am feeling fitter every day and have started doing a few days a week at work. Work feels a lot easier than it did pre-op and I'm looking forward to being able to do the job more effectively and being able to maintain more enthusiasm. Wishful thinking? We'll see!

The weird and the wonderful

2010-02-22T19:49:00.006Z

No particular news at the moment (which is good news in itself I suppose), but here are a few anecdotes to keep you going:

1) The weird

A few nights ago our landline rang at 11.30pm. Will and I were well tucked up in bed. The short version of the story is that I eventually answered the phone - it was a slightly confused Will's mum - there was no drama and I went back to bed. The longer version emerged when I talked to Will about it in the morning and discovered we'd shared an identical thought pattern on hearing the phone ring:
- Oh my god, it's The Call, they must have lungs for Will.
- No, wait, Will already got his lungs.
- So are they giving him another pair?
- Nope, that doesn't happen.
- They must be ringing to tell us his lungs have stopped working.
- But why are they doing that in the middle of the night? And how do they know??
Took a while for the adrenalin to subside, I can tell you.

2) The wonderful

a) We realised that at Will's last clinic appointment, when they hooked him up to do his obs, we were so busy looking at the blood pressure numbers that we completely forgot to even look at his oxygen saturation. How times have changed.

b) On Saturday we went to a wedding and we cheesy-wedding-danced until the music stopped at midnight. The last time we made it to the end of a wedding was our own, 22 months ago.

Clinic update

2010-02-11T17:43:00.002Z

A very quick post to say that I had my clinic appointment today and everything was fine. Jas was happy with my progress and is dropping the steroids down again a little bit, to 10mg/day - on the way to their eventual target of 5mg. The Neoral immunosuppressant levels are also a little high, so that's likely to drop too, and from previous experience even a small decrease in the Neoral dose makes me feel quite a lot better and more human, so that's good news.

I also took part in a clinical study today where they are using their brand spanking new posh and incredibly expensive looking CT scanner to take pictures of various patients at different stages of lung chronic rejection to see if CT scans could be used in future to diagnose early signs of rejection, cutting down on the number of bronchs that need to be done. I was injected with a marker that makes the blood vessels supplying the lungs show up very well under the CT scanner's X-rays and then rode the machine (it's one of those ones where you lie on a bed and it swooshes you back and forth through a do-nut ring shaped scanner). The marker injection makes you feel extremely weird - a hot flush all over and the sensation you have let go of all the bodily functions ...er... down below...

This week I also endured the oesophegal manometry and ph study which was very unpleasant. Having a well-lubed (KY jelly tastes bad!) flexible sensor about half the diameter of a pencil shoved up your nose and then 60cm down into your stomach is not great. Having it then taped to the side of your face and left there for 24h is close to maddening. Gives you a very sore throat. The results of all that will come in the next few weeks and that will tell them whether I need the other operation to sort out the reflux. Sounds fairly likely to me at this stage as there are real benefits to the long term health of the lungs.

Back to clinic in 3 weeks. I'm now on an 'every 3-weeks' regime until the 6-month point, which is the next major milestone.

Holidays, tests and work (?!)

2010-02-07T09:37:00.003Z

Sorry it has been so long since I last posted anything, but life has been so normal that I haven't felt there is much to write about. I have sailed past the 100 day post op mark (today is 107), my PFTs (pumonary function tests) are gradually going up as I nail the technique of using the little machine and find it easier to push out all the air without it hurting my ribcage so much.

Vicky mentioned in her last post from the train down to London that we were packing mercifully light for a weekend away. It was just fantastic. This kind of thing was just competely impossible before - for one, I was pretty unable to do the required amount of walking to visit the big city (every walk to a tube train, every set of stairs in a station, was a real trial), and secondly we would have had to be carrying the NIPPV ventilator, the portable Oxygen concentrator, a nebuliser, a cool bag with ice blocks to keep the DNase and TOBI nebs cold, as well as the normal packing for a weekend away. Not very portable on public transport! This trip we each had our work bags and carried everything around with us all weekend as we saw various friends across the city. It was joyous!

We also spent a long weekend away in Aldeburgh on the Suffolk coast, as a trial first mini-holiday. We didn't want to go too far away from the hospital just in case, and it was great to go back to Aldeburgh after being there last summer, just before the transplant. Again the pre-post transplant transformation made us both very happy and we could indulge in long walks on the marshes and along the beach. One of the nicest things is being able to offer to be the one who walks to the other end of the village to get fish and chips for supper, where before I would have always been too tired and such jobs would default to Vicky. We had incredible bright sunshine, but absolutely freezing temperatures which made it simultaneously beautiful and painful as the windchill ripped into our faces on the walks. I don't have any photos to share with you as we forgot to take the camera - our drive for light packing obviously got the better of us!

On the recovery process, tests and monitoring, it has now been 3.5 weeks since the last bronchoscopy. As you may remember, after that bronch they lowered the dose of the steroids and the Neoral. They haven't checked the levels in my blood since, so I hope they are ok and they know what they are doing! I am going back to clinic next Thursday, which will be a month since the bronch. Hopefully all will be well and I'll be released for another month.

Before that, I have a Oesephegal Manometry and PH Study tomorrow. This is all related to the acid reflux problems I was having, especially just after the op. Things have improved a lot, but there is still a bit going on and, as I wrote before, breathing in the acidic air that comes up can be very damaging for transplanted lungs, so they like to get it sorted. I had the barium swallow a while ago which showed no physical problems with the gullet and no particular reflux, but they still want to study the acidity (PH) down there to make sure things are ok. If not ok, this could lead to a small operation where they tighten the sphincter that joins the gullet to the stomach, to stop the acid coming up. So, tomorrow morning I shall have a catheter (thin tube) stuffed up my nose and down my throat into my gullet, where it will stay for 24 hours. The PH readings are transmitted to a data recorder that sits on your belt. I am allowed to go home (but won't be showing myself in public!) and then have to return on Tuesday morning to have it removed. Hopefully it won't be too uncomfortable...

The possible return to the world of work is on the horizon, as my doctor's sick note runs out at the end of next week. I could renew it if I felt I needed to, but a big part of me would like to get back to work and engage my brain a bit. I've agreed with work that I can start gently, with a couple of days a week and then ramp up as I feel fit. I haven't actually asked the docs at Papworth yet, so will see what they say on Thursday and then take it from there.

It is very easy to feel like it is necessary to make some kind of massive life change after going through an experience like this. You feel you've been given a new lease of life and you need to make the most of it. You are only too aware of the survival statistics and the fact the good times won't last forever - the chronic rejection will start at some point, and it is hard to predict when. So do we go and live by the seaside, Vicky become the bread winner and I live some kind of idyllic life of leisure where I play the piano, compose a symphony, write a novel... It's easy to fall into these kind of reveries, but I reckon there is a big dose of 'grass is greener' syndrome here. I know from my experience of the last 3 months spent at home that I haven't played the piano as much as I would have liked, haven't composed music, haven't written much. Sure, I've been recovering and Vicky thinks I am far too hard on myself, but I suspect that given a life of leisure I would fritter it away with daytime TV, surfing the internet and playing video games rather than achieving much that would make me happy. So on balance I think the best thing is to try and return to the life I had before, enjoy being good at my job. At least give it a go, anyway. If I find it becomes soul destroying and I am constantly thinking 'why am I wasting so much of my days stuck in this office' then I can think again. I also realise now, more than I did at the time, that work was becoming increasingly untenable before the transplant. The very fact I managed to continue working 4 days/week right up to the day of the operation amazes me. Looking back I realised I was pretty useless at work and spent a good proportion of my time absolutely shattered, elbows on desk and head in hands feeling pretty deoxygenated and awful. So a return to the workplace with some energy to actually do the job well should be satisfying and fulfilling. Here's hoping!

3 months today!

2010-01-23T10:02:00.002Z

And we are on the way to London on the train. Staying overnight at Will's friend Charlie's and we're travelling unfeasibly light. Freedom!!

Musings from an anxious wife

2010-01-18T22:10:00.017Z

Many of you have been kind enough to ask how I am through all of this; some have noted my relative absence from the blog since the very early days. Will has been encouraging me to post, and I've been wanting to, but it's hard to know what to say when I honestly have no idea how I am or what I'm feeling. This transplant business is hard. I'll try to explain the worms in my head.

My main battle seems to be anxiety: there is always something to worry about. I feel like my anxiety pool is full up and it only takes a tiny thing to make it spill over, clenching my stomach so that I can't eat and tightening like an elastic band around my throat so that I can't breathe properly or even really speak. Anything will set me off: is that just a cough or is it the start of an infection? was that just a little bit of phlegm or was it a wheeze? is it completely reasonable that Will's tired this evening or is this a sign of rejection? is this just a muscular spasm or is his lung collapsing? was that cry from the other room Will dropping dead or did he just fly his plane into a mountain on Wii Sports Resort? I loved a recent entry on parttimeboddha's blog about the worry he felt when his girlfriend, who is two years post-tx, caught a cold. Clearly these fears don't go away.

Although things were hard before the transplant, day to day life was oddly stable and anxiety free. It can sometimes feel tough to have swapped that for this. We knew Will's poor gungy, crackly and exhausted lungs inside out. We knew the rhythm of the monthly nebuliser cycles; we knew good gunge from bad; we knew that when he was shattered and achy we could put him to bed and plug him into his Nippy ventilator and he'd be better in the morning; we knew when it was time to give in to Papworth and the IVs; we knew we had the hope of a transplant ahead of us. Post-transplant, we know nothing except that this is it - there'll be no more new lungs.

Rationally, I know things were going to get worse. Rationally, I know we are incredibly lucky. Unfairly lucky. Some of you read about Victoria Tremlett, who has been waiting for over two years for her new lungs. Or there's Jessica Wales, who went on the transplant list in 2005, when she was just 16. She battled for four and a half years before getting her new lungs just after Christmas, when she was in hospital literally fighting for every breath. She had had nine false alarms. Although things looked good to start with, it was too late for Jess and she died last week. But the unfair road is a psychological road to nowhere. Sometimes I catch myself flirting with it, wallowing in it a little, trying it out for size. After all, none of this is fair. CF isn't fair; it isn't fair that Will and Mitch and Jamie and Ashley and all the other post-transplant CFers out there had to make this choice; it isn't fair that medical science hasn't quite sorted lung transplantation yet. But then I pull myself together, remember that Life Isn't Fair, remember that we are lucky to have had the option of transplantation, remember that we're not in Haiti, remember that no one knows just what the future holds and remember that Will's new lungs are a gift. Sometimes these notes-to-self feel like horrific cliches and make me want to kick things, but mostly they make me resolve to try harder to stay positive and be happy and not worry and be a better transplant wife and be nicer to Will and not lose patience when he's down and to cook him nice meals and wash his socks and clear out the fridge more often so that the bugs don't bite.

And then sometimes, suddenly, it all seems completely and without reservation totally worth it. Like Saturday. We went and looked at a car, then we walked up to the cinema, then went for a burger, then walked home. Then, instead of collapsing in a massively exhausted and deoxygenated heap, Will voluntarily sat up and watched Bridget Jones' Diary through to the end without falling asleep on the sofa even once. And then we got up early on Sunday, packed the smallest overnight bag in our overnight bag history, drove to Will's sister's house, had a lovely countryside walk with wellies and mud and Will raced Billy UP THE HILL. We played with our delightful nephews and niece, ate an enormous meal and sat up until midnight listening to nostalgic music and drinking wine*. This might sound like a completely normal weekend to you. It does to me too and it is fabulous.

So how am I doing? Terrified. Is this the hardest thing I've ever experienced? Yes. Is it worth it? Yes. I'll leave you to judge yourselves with the following photos. This first is a rare photo of Will+oxygen, as delivered by The Monkey, our chugging portable oxygen concentrator. Will was determined to climb this hill in St Ives in Cornwall this summer and I managed to persuade him not to remove the tubes before I took the photo. The second photo freaked us out a little when we looked at it again the other day. It was taken on our holiday in Aldeburgh in July, just before Will went on the list. He really does look ill, doesn't he?! The third was taken over Christmas and is of Will RUNNING**.

* In moderation of course
**Just in case a recent post-txer reads this and feels inadequate, I'd like to make it clear that he didn't run for very long. And it hurt his chest.

And the person going through to the next round is...

2010-01-14T17:41:00.003Z

...Will Cramer!! Yes, it's an all clear for me on the 12-week bronch and biopsy. The results were 'completely normal' and there was 'no infection'. They seem to refer to infection as a flare up of a bacterial presence so I expect the pseudomonas is still there in some capacity, although I didn't actually ask, so don't know.

In the end they persuaded me to stay the night after the bronch as they wanted to do an X-ray the next day to check for any inadvertent damage to the lungs from poking around and taking biopsies. So I was installed in the RSSC (Respiratory Support and Sleep Centre), where they happened to have a spare bed as the usual Chest Medical wards were full. This is where I used to go for sleep studies when I used the NIPPV ventilator before the transplant, and I think I wrote about my fairly grim experience of one of those studies in the early stages of this blog. After spending lots of time in CF and Transplant wards and clinics, where everyone is doing their very best to look after themselves, it is striking to spend time in RSSC where the majority of patients have smoking-related emphysema or are desperately obese and so have problems breathing. There is a very different feel to the place - it's the 'other side' of NHS care, and feels a lot less positive.

I was second on the list so went down for the bronch around 3pm. I was mid-conversation with Jas about various things while Massoud (Little Mo) busily started injecting the sedative, so my conversational skills got a little hazy as I felt the now familiar numbness and tingling in my feet as the drug took hold. I was awake as they inserted the probe and it was very uncomfortable - I felt like I was choking and coughed a few times - I remember them encouraging me to breathe and heard Jas asking for another 2ml of the sedative. And that's the last thing I remember before being woken at the end of the procedure and getting onto the bed to be wheeled back to the ward. With all that sedative I was straight back to sleep and Vicky tells me I slept soundly for an hour before waking up around 5pm.

Not much else to tell really. I slept pretty well as I was in a side room so was spared the sound of all the other RSSC patients' ventilators whirring. Today was extremely dull. It was dreary and pissing with rain and I had nothing at all to do other than a 5 minute X-ray (Radiologist: "This is supposed to check for pneumothorax, but I think you'd already know if you had one of those"). I went for a walk in the rain, visited the duck pond up by Mallard ward for old times' sake, found it to be mostly frozen over, went back to the ward, messed up the Sudoku in the paper I'd bought, finished my book, watched rubbish daytime tv and waited for the docs to arrive with the results.

This 12-week point is a milestone, as I've pointed out several times, and the all clear result seems to have been a trigger for removal of a few meds. They've stopped Aciclovir (anti-herpes), Colomycin/salbutamol nebulisers (as the infection looks ok), Amiloride (one of the diuretics), Nystatin (anti-thrush). The immunosuppression is also starting to taper off. The prednisilone steroids are reduced to 12.5mg/day from 15mg, with the aim of getting down to 5mg. The Neoral is down to 175mg, 3 times a day, from 200mg, with the aim of reducing it as much as possible over time.

For my whole life pre-transplant I had to do physio in the morning to clear my lungs. 14 years ago I added to the regime of physio and pills my first nebuliser - DNase, a mucus-thinning drug started during my 4th year at University. From then on in it only got more and more onerous with additional nebs, right up to the point pre-transplant where the regime took around an hour. Now, for the first time ever I can just get up and go. Well...pop a few pills, weigh myself, take my temperature, do lung function and go. It's still completely brilliant!

It's Bronch time again!

2010-01-12T14:03:00.003Z

Tomorrow is a fairly significant event - the 12 week bronchoscopy and biopsy. It seems this is the first major milestone on the standard recovery/rehab path where they check for infection and rejection, and if everything looks ok they start to taper off the steroids and maybe stop some of the other meds, although I'm not sure which ones - presumably some of the anti-fungal stuff can stop when the steroids go down as they are responsible for the risk of thrush.

The prospect of these bronchs tends to burrow subconsciously into your brain and gradually, over the days preceding them, my and Vicky's anxiety grows. It's certainly happened this time - little things like a bit of sputum or feeling slightly tight in the chest take on too much significance. Either one or the other of us is a bit ratty or quiet and down in the dumps. It hasn't been helped this time round by a couple of annoying/scary/odd episodes:

On Friday I was getting itchy all over, and I decided it was a reaction to one of the drugs - I had red slightly rashy legs and hot knees, weirdly, along with quite swollen ankles. The swollen ankles is a very common side effect of the amlodipine anti-blood pressure medication that I had started after the last clinic, and so I guessed the rash and itching was also to do with this drug, as it was the only thing that had been added into the regime. I rang Papworth and they said to hold off the drug and we'll discuss it at clinic tomorrow, and start me on an alternative medication. Gradually over the weekend and yesterday the symptoms have subsided and I'm much more comfortable now. These kind of side effects that are constant reminders of the fact you are loaded up with hundreds of pills can really get you down. I found myself feeling like it was all a bit out of control and somehow the whole thing was fake: The stability and feelings of being well I was experiencing were conjured up by the medication, without which the lungs would quickly stop working. The medication itself was then harming me causing me to take more medication that was having side effects. I almost found myself thinking I wanted to have my old, familiar lungs back, with the familiar regime of drugs. At least they were mine. As you can imagine, this kind of thought pattern is not very constructive or even rational, but I was stuck with it for a day.

What then happened was extremely odd. While making some coffee on Sunday morning I suddenly had double vision. My vision just split into two images at a vertical separation of what appeared to be about 5cm. However much I rubbed my eyes, blinked or tried to focus I couldn't get a single image. Needless to say, this was very scary. Covering up each eye one by one showed that the individual eyes were working, it was just that my brain couldn't resolve the two images into one. After 4 or 5 minutes the images started moving together and it sorted itself out. This isn't something I've experienced before, or since. I looked it up on the web and the NHS Choices website told me I'd had binocular double-vision and there were lots of potential causes, almost all of them terrifying, like stroke, bleeding behind the eyes, nerve damage, diabetes etc etc. However, since it went away on its own I'm hoping it was just a muscle spasm because I was a bit tired. I rang Papworth again and after speaking with Jas the nurse came back to me saying 'Jas isn't too concerned, so we'll just see you in clinic on Wednesday'. No explanation of why he wasn't concerned - whether it is a common thing and he's seen it before, that it's due to the drugs (Neoral lists 'visual disturbances' amongst its many many side effects), or just that since it sorted itself out he wasn't worried, or maybe he just doesn't know anything about eyes... I guess I'll ask and find out tomorrow.

So the rash and the double-vision left me feeling quite down on Sunday, but by yesterday I was feeling more positive again. Now I just need to keep my fingers crossed for tomorrow's procedure, and then suffer in anticipation through Thursday until the results call comes. At least they are letting me do the bronch as an outpatient again, so I can get home tomorrow night.

The rollercoaster continues...

Drinking paint

2010-01-07T15:20:00.005Z

Had the barium swallow yesterday and it wasn't all that bad - certainly not as awful as some people had said who'd had one. It is a mildly fruit flavoured white paint, served in a plastic cup. It seemed to come out of a drinks can as there was an empty one on the side. I had the procedure in the same room as the bronchoscopys, so now understand why the posh swively Xray machine is in there. I started standing on a little platform with a vertical plate /bed behind my back, holding the cup of liquid in my right hand as the radiographer manoevered the Xray in front of my throat. The Xray machine appears in front of you as a round plate, about the size of a car wheel, but with a flat gray plate on the front. It sits about 4 inches from your front. I was then asked to take a mouthful of the liquid and hold it in my mouth and then, on the radiographer's command, to swallow. The Xray then moved down my front taking a series of pictures, following the white liquid as it descended to my gullet and stomach. After a few mouthfuls with pictures at different angles they motorized the bed/platform to a horizontal position and I lay on my front and did another swallow, then lay on my back to see if any reflux occured.

The result of all this was that there was no reflux. There was also no hernia (where a little bit of stomach pokes up through the diaphragm. So both of those are good pieces of news. There was, however, a little bit of 'hold-up' where there was an accumulation of liquid in the gullet, just above the sphincter into the stomach - I was shown this on one of the shots on the monitor - and the radiographer explained that this could explain the symptoms I've had, and certainly is consistent with the feeling I had earlier in the recovery period where I couldn't eat fast at all as it felt like everything was backing up and wouldn't go down. It will be interesting to get Jas' reading of the results, but as far as I could see there was nothing structurally wrong so maybe I won't need the op. We'll see. It may just be a case of learning to eat a bit more slowly and keeping on taking the omeprazole anti-acid pill.

On another matter, I'm getting a little frustrated with the lung function testing. They give everyone a portable spirometer that you blow into to measure your FVC and FEV1 every day, as a 10% drop in FEV1 is a goood indicator of things going wrong. Problem is that using the thing is massively technique based. I get wildly variable results, and the other day randomly managed to get an FEV1 of 2.9L and simply cannot repeat it, however many times I try. The best I could get today was 2.44. Where has that half litre of air gone? The technique seems to require a weird combination of being relaxed and blowing out hard and I can't quite get it. I know the good results are out there/in my lungs somewhere... I guess eventually I'll learn. Of course, I made the mistake of giving Vicky a go and without any practice she blew my results out of the water straight away, first try. Let's just say she wasn't getting a second try... Something to do with a youth spent doing lots of swimming training.

So life carries on, but there are still some difficulties. I still sleep badly - I get little chunks, no decent stretches it seems. I regularly wake up three or four times a night and have very weird, vivid and often disturbing dreams. Last night I dreamt I was driving and had awful pain in my shoulders so had to pull over, and woke with terrible pain in my shoulders and rib cage, surprise surprise. I have got this a few times, generally related to bad posture in bed, driving or slouching on a sofa and it is a quite extraordinary pain. It is as if my whole back and rib cage go into spasm all at once. The first time it happened I almost called 999, but now recognise it is muscular and not the lungs falling over. It is pretty much the only pain I've experienced that is bad enough to make me involuntarily sick. If I walk around and do stretches it does go away, but is unpleasant. I seem also to get more little pains in random places like joints of my big toe, or my calves - enough to wake me sometimes. Of course this could just be because I am doing more exercise than ever before.

I also had a horrible dream last night that I was coughing up CF-style sputum again - the big sticky green globs that used to be a daily familiarity to me. In the dream there was obviously something terribly wrong and I needed to call the doctors - the lungs were failing already.

As the concerns of the transplant and recovery recede and stability and normality return other things start to crowd into the spare worry space and the major one currently is how best to deal with my mother's needs as Alzheimer's begins to have a really debilitating effect on her. She lives in an isolated location and is getting to the point where she needs increasing care. Of course many people have to deal with these choices and difficult decisions, but we didn't expect to have to do it so soon - mum is only 67 and is already fairly bad. It is so very hard to know if you are doing the right thing when it is almost impossible to work out what she really wants - is it most important to stay in her own home and have care brought in, remaining in an isolated place and not seeing her kids that much, or should we encourage her to move into a home nearer to either me or my sister? How do we finance the care? Sell her house, equity release? And so on and so on. Once you start looking into these issues you realise it requires a great deal of research and effort and I have the conflict between caring for myself in the period I am off work and using the time to make some headway into dealing with these issues. My sister is always very busy with 3 kids under 6 and working 2 days a week, and she puts in a great deal of time and effort into helping mum already. I need to start to help out more.

Ah well, sorry to grumble. It is approaching 4pm Neoral time, so I'll stop now, take some pills and then walk through the ice and snow into Cambridge to spend an HMV token I got for Christmas (on some silly game for the Wii I expect) and then meet Vicky after work for some dinner.

A New Year update

2010-01-04T15:50:00.012Z

Happy New Year everyone and I'm very sorry for not writing anything over the festive period. Just so darned festive, you see. Something to do with that anyway, combined with a generous dose of laziness and far too much chocolate. One of the disadvantages of my situation is having to weigh myself every morning - let's just say that I almost had to call Papworth a couple of times as I was close to exceeding the 2kg in 2 days weight gain limit! Seems to have settled now at what must be my 'natural' weight.

So, where to start? After a few more shopping trips we packed Vicky's Clio and endured a very busy and frozen journey out to my mum's in North Norfolk. We were lucky that East Anglia was busily starting to thaw when other parts of the country were getting much worse. We arrived to a VERY cold farmhouse and made ourselves busy getting wood and lighting the wood burner to try and warm up the 'big room'. Once this room gets warm it helps raise the temperature of the whole house.

The view from the Big Room when we arrived in Norfolk

We helped mum decorate the tree and made the old place as merry as we could with good chocolate, booze and springs of holly on the beams. On Christmas Eve we went for an extremely bracing walk on the beach at a very desolate Walcott and had excellent fish and chips for lunch in the cafe. For Christmas we met up with my sister, her family and inlaws and then on Boxing Day they all came to mum's house. We went for a walk down the field and were pleased to see the trees we'd planted 20 years ago had finally provided enough cover for the brambles to be supressed and a proper little wood has appeared.

We also managed to catch on camera the moment when my elder nephew attempted to murder my younger nephew:

On Tuesday 29th we left Norfolk and made our way back to Cambridge for the night, as I was due in clinic at Papworth on Wednesday morning. We arrived early at clinic to try and beat the first come, first served system. Arriving at 8:30am got me at number 2 on the Lung List, but we rapidly realised that there were very few people there anyway - I think 4 in total - so we need not have bothered to get up early. My blood pressure came in at 160/100, which is high. Jas said that 96.4% of people on Cyclosporin (Neoral) got high blood pressure and he didn't believe the other 3.6%. He thought we should treat it to make sure my heart isn't working too hard, so I am now on 5mg of Amlodipine a day. The most common side effect is swollen ankles, so I'm waiting to see if they appear. Apparently they can treat that with another drug....wheels within wheels...

It is now more that 6 weeks since the fluid drain so I did my first official lung function test, and got an FVC (Full vital capacity) of 3.5ish and an FEV1 (volume exhaled in the first 1 second) of 2.43 litres. This puts me at about 70% predicted for my age, sex and height. Jas said this was 'good', and I have read in other places that these numbers can improve over time (someone had 50% at 3 months and 80% at 6 months), so I am staying positive. I also remember that during the assessment Jas had said it is wildly variable with some people having 120% lung function and others with 30%, but both reporting 100% oxygenation. My saturations were 99% and seem, from the odd measurement I've done at home, to be very stable in the high 90s, so that is very positive.

We discussed acid reflux which I still suffer from periodically. Jas said that in CF-ers the stomach produces lots of acid to try and compensate for the lack of digestive enzymes - attempting to break down the food more in the stomach. Also, CF folk can have weak diaphragms due to the years of shallow breathing, and this, combined with the trauma of the operation can mean a lack of support of the osoephagus at the sphincter at the top of the stomach. This weakening of the sphincter, combined with the high acid level in the stomach, leads to reflux. This in turn has been stongly shown to be bad news for the transplanted lungs as you are constantly burping up acid air and then breathing it back down into the lungs. Nasty. There are two ways to combat this. The first is omeprazole which inhibits the production of stomach acid (which I am already taking) and the second is to do an operation to give more support to the osoephagus and shpincter by wrapping a bit of stomach around it, or something - frankly I didn't quite get all the details... The operation is done by keyhole surgery, would involve a 3-day stay in Addenbrookes hospital in Cambridge, and would require a 'mushy diet' for 4-6 weeks afterwards. I know which bit would piss me off the most already. To decide whether the operation is necessary they will first do a Barium Swallow, where you drink a fluid that reflects X-rays and so shows up where stuff goes when you drink/eat - this checks for any physical abnormalities. The second test is a 24h monitoring of stomach ph, which involves having a tube up your nose and down into the stomach, and carrying around a little data recorder on your belt.

The Barium swallow is scheduled for Wednesday this week. Apparently it is pretty grim - doesn't taste of much but is very much like swallowing emulsion paint. Great. The ph monitoring isn't yet scheduled, but I guess will be in the next few weeks.

The final bit of info Jas had was that in my last bronch the samples of sputum they took grew pseudomonas aeruginosa, my old CF lungs bacterium of choice. Not a lot, but it is there. This is extremely common as I'm sure I've already mentioned because it lives not only in the CF lungs but also in the upper airway and sinuses which, of course, were not transplanted. The new lungs should be much better at dealing with it, and so far I'm not feeling anything other than a tiny bit of sputum from time to time. I'm still doing the nebulised antibiotics, which will help to keep it at bay, but I'm not sure if this means I'll continue to need to do them ad infinitum.

Jas wants to do another bronchoscopy and biopsy on Wednesday next week, a week after the Barium Swallow. That will be nominally the 3-month post-op point (in reality 2 days early) and so is a big milestone. If there is still no rejection they will start to very gradually reduce the steroid dose.

A mixed bag of a clinic then, but largely positive, and we left feeling pretty happy and got in the car to drive directly to Vicky's mum's house in Oxfordshire. After a fairly dire session on the M25 we arrived to another set of Christmas present giving and receiving and had a very relaxing time. I was sneezing quite a lot by this point - it seemed to be a combination of a slight cold I must have picked up from one of those snotty nephews and a fairly severe allergy to Vicky's mum's 2 dogs and her sister's cat. It seems that immunosuppressants don't interfere with histamine reactions - must be a different bit of the immune system entirely. I ended up on the first night in a bit of a sneezy, blocked up, snotty mess and then woke up at 1:30am with itchy legs and a rash. I ended up calling Papworth and asking them if it was ok for me to take antihisthamines - I have to check every drug carefully just in case. They said yes and so I managed the next few days with plenty of pills and staying away from the dogs as much as possible. New Years Eve was very quiet - for some reason I was utterly shattered so ended up in bed at 10pm, so nothing to report there.

On New Years Day we went to see Vicky's Dad, had dinner, a most fabulous firework display and yet more presents (endless Christmas was the theme this year). On the way we had stopped off for a sunset walk up a small hill - Wittenham Clumps - and so I will leave you with this particularly flattering shot of two sisters. My darling wife on the right and her younger sister Chloe. If you got this far, congratulations and Happy New Year again!

That's too mean isn't it? How about this one instead. Much better:

The dreaded Christmas shopping

2009-12-21T14:53:00.002Z

Well, it was a sort of success. Today started well - I got up pretty early and after breakfast walked over to the surgery to get (yet another) prescription and then dropped it into the pharmacy. Couldn't have done that walk before the transplant. After getting home I did my 10 mins warm-up exercises and then 20 mins on the exercise bike and got up a good sweat. Certainly couldn't have done that before the transplant. Had a shower and dried myself. Couldn't even have done that before the transplant without some oxygen to help me along. What I'm trying to say is that I have to remember how bad it was before, how good it is now and how lucky I am.

Of course we then really needed to get into town to do some Christmas shopping, leaving it until the last minute as usual and perhaps having a reasonable excuse this year for not getting it done yet. We walked in (couldn't have done that before....you get the idea), bought a couple of things, had lunch with a friend in Carluccio's and that was basically enough for me. I started to feel achy and a bit broken physically, so left Vicky to it and walked home. Still, probably the most activity in a 5-hour period yet, so pretty happy about it. The shopping will have to get done...er...well, what's Christmas Eve for anyway??

Hope everyone is revving up for a super Christmas. I just want to say thank you again to everyone for the amazing levels of support through all sorts of means over the last couple of months. It has been humbling and marvellous - we couldn't have done it without you.

8 weeks and an all clear

2009-12-18T12:14:00.005Z

This time 8 weeks ago I was one hour out of theatre, asleep on the Intensive Care Ward. This anniversary feels a bit significant as it opens up a couple of things for me: firstly, driving, which the doc said at clinic on Weds should be ok; and secondly, riding a bike. With as much snow on the ground as we currently have, needless to say I won't be attempting my maiden bike ride today. I think I'll wait until after the cold snap...

The other piece of news to relate is that I had a call from Val, one of the nurses at Papworth, to say that the biopsies taken during the bronch on Wednesday were all clear - no rejection. Hooray! Them steroids they working! They want me back at clinic in between Christmas and New Year, on the 30th, which is a minor pain as we may be in Norfolk or Oxfordshire, but I guess otherwise the gap would be too long between checks for this stage of my recovery.

They hadn't yet got the microbiology results back, which is where they analyse the lung secretions to see if there is any bacterial infection. However, Jas said after the bronch that it was all looking very clean and clear so it is pretty unlikely there is anything untoward going on.

All good news then. A beautiful snowy day (especially if you aren't trying to drive to work!) and a great excuse to start feeling really Christmassy. Ho Ho Ho!

Bonus super-speed bronch

2009-12-16T18:53:00.004Z

The CMU wards may have been rife with the Norovirus winter vomiting bug but they also have a Day Ward, just down the corridor from the bronch room, which is used to give beds for people having simple procedures. In my case, because I live only 30 minutes down the road from Papworth, they had decided to let me have the bronch from the Day Ward, go back there and rest for 2 hours and then go home. So home I am!

I am relieved to be able to tell you there were no complications - I have neither bleeding nor a punctured lung. On my request they gave me slightly more sedation so I wasn't so awake and aware as last time, which made the whole thing less traumatic and it seemed to fly by. I lay on my side for an hour, then sat up and drank some water, then a cup of coffee and finally was brought a sandwich and a bit of cake. They sent me to X-ray for the post-bronch shot and shortly after that the doc came and said it looked ok and I could go.

Jas came to chat just after the bronch, which I don't remember much of, but the general gist was that it was looking good, the joins between new lungs and old tubes was looking fine and there was still a little bit of sloughing of material from the lung walls, which probably explains the low level of sputum I'm still experiencing, but this was normal for the stage we are at.

They will ring me tomorrow evening or Friday with the biopsy results so I'll be hoping that the low level rejection (I now know this is officially called A1 rejection) has cleared up and I'm ok. If all is fine they plan to see me next week for a standard clinic check up and if I'm still ok they can then leave it for a couple of weeks so I have time off over Christmas and New Year.

Further developments

2009-12-15T16:11:00.002Z

I just had a call from one of the nurses on the transplant team saying that there is 'some diarrhoea and vomiting' on the Chest Medical Unit (CMU) so it is unlikely that they will admit me for the bronch tomorrow as the risk is too high. I had the winter vomiting Norovirus last year (or was it the year before?) when I was in hospital for a CF chest infection and it was one of the worst experiences of my life - I've never felt so completely knocked out - so am extremely keen not to catch that again, especially with a severely compromised immune system.

So I am to come to clinic and do the nil-by-mouth thing just in case. Jas will make a call depending on the situation on the CMU and how I have been. I said to the nurse that I've been very well for the last couple of weeks, so I am thinking it looks fairly unlikely that I will be bronched. I think the scheduled bronch, if it wasn't for this little bout of rejection and increased steroids, would have been after 3 weeks rather than 2, so maybe Jas will delay the bronch by a week. Unfortunately that means if there were to be anything wrong in a week's time it would be that much more likely that I'd be confined to hospital over Christmas.

I guess I am severely counting chickens and should just wait and see what happens tomorrow.

The other bit of news that I haven't yet reported on the blog is the great improvement in my voice. After starting the higher dose of steroids it started coming back and after a couple of days the speaking voice was almost normal. Now I can speak completely fine and almost sing - the range is pretty much there, just the tone leaves something to be desired. I wonder if the anti-inflammatory effects of the steroids helped kick the vocal chords back into action, or whether it was just natural recovery? Whatever the reason, this is a most heartening development and it gives me some confidence that no lasting damage has been done and that I might even be able to sing again, with the bonus of real lung capacity - the thing that held me back in recent years. So here's to being able to sing along to some Christmas carols in due course!

Bronch tomorrow

2009-12-15T08:22:00.003Z

My bronch has been moved to tomorrow from today, so I have one more day's respite before having to go through the procedure, the overnight stay in hospital and the nervous wait for the result. I've been feeling very good for the last week or two and so am hoping that everything is hunky dory. My steroids are back down to the more standard level of 15mg today, having tapered them off as instructed over the last 4 days - hopefully they can now stay there.

I just want to send my best wishes out to Mitch (www.checkonmitch.com) who has had a really hard month with infection, narrowing of airways and then to top it all some bleeding during his recent bronch that left him in ICU. I am just over one month behind Mitch on my Tx recovery and so am obviously a bit nervous and hoping quite hard that my third month is less eventful than his has been, and that there are no problems with bleeding in my bronch tomorrow...

Ah well, focus on the positive eh? I am having a very badly needed haircut today. Frankly I needed one before the operation and now it is looking faintly (ok, completely) ridiculous. And soon it will be 8 weeks which will mean I'm allowed to ride a bike, which will further increase my new found mobility freedoms. Onward and upward...

All the pills

2009-12-09T17:19:00.003Z

I was just organising my drugs to try and make the routine and tracking of quantities easier and thought you might be amused to see a photo of my total current stock. You'll recognise the 'current pills' tray from the earlier photo.

Just call me Mr. Pharmacy...

A quick update

2009-12-09T15:49:00.003Z

Sorry for my lack of posting for the last week. The old adage 'no news is good news' has applied, luckily. After getting discharged from hospital following the bronchoscopy I started the higher dose of steroids last Thursday. On Friday I suddenly felt a lot better and more human, and the feeling continued through the weekend and Monday. I had been sneezing a bit, and had a runny nose, and that stopped too.

Yesterday I felt rather more nauseated and the nose started playing up a bit. Today I feel much the same - better than before but slightly more fragile and tired. Partly, probably, due to a poor night's sleep last night. Maybe I'm getting a series of mild colds - it's very hard to tell what is really going on. Sometimes I feel completely time-shifted so I am totally asleep in the middle of the day (I've just awoken from an hour's nap), and then awake and restless when I go to bed at night.

The general message, though, is one of improvement and a feeling of normality slowly returning. I was even well enough on Monday to go with my Dad to Duxford air museum, where he's doing some work as a volunteer helping to maintain a large old flying boat called Catalina. He can get in free, so we had a look around the largely empty exhibits (a cold, rainy and windy Monday mid-morning is not peak time...) and had a nice boy/dad time discussing the technical matters of flight, different planes and the importance of a high bypass ratio for efficiency in jet engines...

Today I had a standard clinic appointment. Jas was away so I saw Little Mo, whose name I find out is Mahmoud. He seemed happy I was feeling ok and said the fluid is still on the bottom of both lungs (the remainder of that which he drained a few weeks ago) but I shouldn't be worried about as it is doing no harm. He showed me the area of white clouding on the X-ray and how he thought it had improved marginally since the last X-ray a week ago. I asked him to estimate the volume and he reckoned half to 1 litre of fluid (!) but still insisted it was best not to try and drain it. If you stick a needle in the risk of infection and turning it all to puss, or puncturing a lung, is too high to make it worth it. It shouldn't affect my ability to breathe in and he hopes it will dissipate over time.

I am to start tapering off the steroids back to 15mg after 10 days, so on Sunday I'll reduce to 25mg, Monday 20mg etc. and then on Tuesday next week go back for clinic and the follow-up bronch in the afternoon, with another overnight stay.

Vicky is doing more work, which is stressing her out a bit - that's work for you I guess. She's been working from home in the mornings and going to the office most afternoons. I fill my time with piano practice (Rachmaninov prelude in D major is my current thing. It is brilliant. Also my friend Sarah sent me a Mozart piano concerto with the orchestral accompaniment on CD which is hilarious fun - mostly because I can't hope to keep up with the orchestra as the thing whips by at such blistering pace and it is all right-hand passagework semiquavers for pages!), and watching box set DVDs on telly which several friends have been kind enought to gift/lend to me. There's always the Wii and PS2 to keep me busy too, as well, of course, as the odd bit of exercise here and there!

I have been meaning to post my experience of the call, the pre-op stuff, and waking up in intensive care - partly as it is a gap in the blog record and partly to document it for myself before I entirely forget what it was like. I did scribble a few notes in the early weeks in hospital to help remind myself, so I'll do it when I have the energy to revisit that rather traumatic time. 'Till then, keep well and warm everyone and don't get too stressed about the Christmas shopping...

Bronch and results

2009-12-02T19:12:00.003Z

I didn't quite realise, when going to clinic on Tuesday morning, that when they do a bronch they keep you in hospital overnight and the next day until the results of the biopsy come in the late afternoon. Lucky I went with a bag packed and all my drugs, as we are instructed to for all clinic appointments - just in case.

So we did the clinic thing - see a nurse (while Vicky was busily buying a new month's parking permit for the car - 1st December of course!), queue up for blood tests, wait for ages for the chest X-Ray, see Jas. By the time all that was done, and due to the fact I felt grim when I woke up that morning and so was rather slow in getting going, it was about 12:30. During the appointment with Jas it turned out there was some confusion about whether I was supposed to be bronched this week or next week, but they managed to find me a bed on the ward and set up the bronch for the afternoon. The bed wouldn't be ready until 2pm, so we went to the canteen and I watched Vicky eat a sandwich and some ambrosia creamed rice from a small pot - I couldn't have anything because I was nil-by-mouth since breakfast to prepare for the bronch...presumably to avoid you being sick when they shove a camera down your throat!

Vicky helped me carry bags to the ward and then went off to work. As I sat outside the ward in the corridor waiting for them to make the bed a bloke turned up saying he had come to take me to my procedure. I explained I hadn't even got a bed yet, and hadn't been admitted, no wrist bands (that give your name, DOB etc), and so he went into the ward to find out what was going on. Cue mad rush to get me in a surgical gown and put wristbands on and get downstairs to the FOB room. It turns out later that Jas had got me a bed by, basically, lying and saying I was unwell and needed to be admitted as an emergency! Apparently they'd changed round the whole ward and moved loads of people to fit me in. No wonder, then, that none of them knew I had a bronch planned. There was quite a lot of eye rolling from various nurses ("Dr. Parmer! Tch!") later on.

The bronch room is very chilly and surprisingly full of people. I think there were about 8 people in there - various nurses, technicians and two docs - Jas and "Little Mo". I am learning their nicknames now - there is "Big Mo", otherwise known as "Mighty Mo", who is a small (ah the irony!) doctor called Mohammed. "Little Mo" is taller - not sure what his actual name is. Anyway, I digress... The bronch room is about living room sized and has a bed, a big X-ray machine and a bank of LCD monitors. I think it doubles up as an X-ray suite or CT scanner or something. I lay on the bed and was attached to a monitor to look at my blood pressure, pulse and oxygenation, and they put a little bit of oxygen up my nose to keep things hunky-dory. One of the nurses sprayed my throat 3 times with an anaesthetic spray which tastes of very bitter bananas and makes you feel like you've swallowed a golf ball. They then put a Hannibal Lector style mouth thing in which you bite and keeps your mouth open, secured with an elastic strap around the back of your head. Nice. Jas put a venflon (a short IV line) into the back of my right hand (ouch!) and then Little Mo administered a dose of metocloprimide (anti-sickness) and then the midazolam sedation.

Now, I'm not sure if I'm getting used to the sedation, but for each of the four bronchs I have had since the op I have been marginally more awake. I don't think I was awake for the whole thing but at some point I was very awake and could look up at the screens and see the inside of my lungs and hear them getting confused about how many biopsies they had taken (it seemed they had lost count around 8). Little Mo was in control of the Fibre Optic, which I could see going into my mouth and was black, around the diameter of a pen, and had white markings on it, which I wonder if were to indicate what length of the FO is inside...? Little Mo was saying "open....close" each time they did a biopsy and the screen would go red with blood as they chopped a bit of my lung off. It was rather uncomfortable as they shoved the cable in and out, and I was thinking "How do I tell them I'm awake" since you can't speak. I thought about waving, but didn't. It was all over fairly quickly and I got wheeled on a stretcher back up to the ward, slid across onto my bed and slept for about an hour.

I got up for some supper, was absolutely starving, and wolfed it down. Vicky turned up and that was the end of a busy Tuesday. After a rubbish night's sleep my Wednesday consisted of an ECG to check my heart out (as I'd been complaining of the fast heart rate) and another X-Ray to check they hadn't damaged anything during the bronch. I'll be glowing soon, the number of X-Rays I've had...

About 4pm Weds, Little Mo came into the ward and said the bronch was fine and I could go home. He qualified 'fine' with the fact that the result came back as 'Very Low Level Rejection' which is the lowest measurable and classifiable level (they use a 5 or 6 level descriptive scale it seems). He said they don't treat it at that level. He then spoke to Jas on the phone, came back over and said 'OK, most people don't treat it, but Jas wants to increase your steroid dose to 30mg a day for 10 days and then do another bronch, just in case it is the start of something worse'. 30mg is a doubling of my current dose, and I fear may send me slightly loopy. When I was on the higher steroid doses in hospital, as you may remember, I had quite severe mood swings so am slightly nervous about that. I've taken the first dose about half an hour ago and am ok so far. I guess I have to think that it is a lot better to be a bit weird in the head for a week or two than to reject my nice new lungs. Lesser of two evils and all that...

So, Vicky and I plod on through this weird, unstructured, uncertain, worrisome life, wondering when some stability will come. I guess it will be a while yet.

Clinic and bronchoscopy tomorrow

2009-11-30T19:08:00.002Z

My temperature is definitely back to normal now, the pulse rate is still raised (but this could be consistent with being back on the higher dose of Neoral), and the lungs seem to be working ok even though I am very tired a lot of the time.

Today I went for a walk for my exercise dose and ended up wandering all the way into Cambridge, popped into the Grand Arcade and then came home via the freezing Siberian wilderness that is Parker's Piece. Around a 40 minute wander, which made me extremely happy as I simply couldn't have done it before the Tx, even with Oxygen.

I am doing a controlled experiment with painkillers and am trying to come off the paracetamol. I figured that 5 or 6 weeks of taking 8 paracetamol a day is probably enough and so I have been managing without for the last couple of days. Without, that is, until around 6pm when the aches in my ribcage, wound, back and shoulders have forced me to take a couple. I'm still taking a Tramadol before bed too, but generally cutting down. Sleeping is still difficult and I wake up after 2-3 hours and then every hour or two. However, I have managed to sleep for short periods on my right hand side, which is the less painful side, so things are improving.

I think I am suffering somewhat with SAD - as soon as it gets dark at 4pm, combined with the massive lack of structure in my days, I tend to go into a bit of a slough of despond. Maybe I should invest in a light box?

So, finally to the subject of this post. Tomorrow is a busy day - clinic in the morning; more blood tests and X-Ray and a chat with Jas, and then a FOB (Fibre Optic Bronchoscopy) in the afternoon to look at how the lungs are doing, hoover up any gunge that has accumulated and do a biopsy to check for rejection again. Keep everything crossed that it is a second 'all clear'... I am quite looking forward to the Midazolam sedation they give you for the FOB - at least it will mean I get a nice restful sleep for a few hours!

Home again and back online

2009-11-27T13:44:00.003Z

I'm back home and out of the reception blackspot that is Duchess Ward. I had a fairly unpleasant time, feeling rather ill and with some fairly spectacular stomach problems (no, Rich, not as bad as that time in Kenya, but pretty bad all the same). Because of the diarrhoea I was 'barrier nursed' and shoved into the most prison-cell-like side room ever. A tiny window, almost like an arrow slit, with a view of the back of another ward was my only link to reality. I couldn't leave the room and everyone who came in had to wear gloves and a disposable plastic apron. I had a telly and en-suite bathroom, sure, but the walls were very blue and this cast a horrible sickly light over everything, making it seem even more unworldly. The result of all this was that by last night I had somewhat lost it emotionally and was in a bit of a state, feeling awfully sick and just desperately trapped. At least in prison you get yard time...

Anyway, they did various stool samples, for which we still await results, but came to the conclusion it was a viral infection that I'd picked up. Last night I slept a lot better and this morning things were much more normal and I felt better. The CRP number was down already on Weds when I went in to 65, from 115 on Monday. I did more bloods this morning so they'll have the results of those later today. As I was feeling better the doc thought I could go home. Result.

The next thing is clinic on Tuesday, with a bronchoscopy to check for rejection again. I feel the lungs are doing ok really, with minimal sputum and so I hope the bronch is ok. All I need to do, mainly for Vicky's sanity, is stay well over the weekend and until Tuesday - a bit of stability is really what we both need. The variation in physical health and mood - the fabled and much discussed rollercoaster - is the thing that knocks you about.

I understand as time goes on why they recommend an absolute minimum of 3 months before returning to work. The recovery rate at first seems extraordinarily quick, as many of you have remarked, but then slows down to the point that sometimes it is unnoticeable and often you are getting worse. It is partly about recovery, in terms of wound healing (the sternum takes 3-4 months), but a lot to do with stability, getting the drugs settled, feeling like it is all under control. Also I am very tired a lot of the time, which I often forget due to the vastly improved lung function fooling me into thinking I can do anything - I tend to overdo the exercise or activity and then suffer. But you must be able to imagine the temptation I am under to go and do active stuff!

Here's hoping for a stable weekend...

Back in to hospital

2009-11-25T11:55:00.003Z

I went back to clinic this morning after a phone call last night from one of the nurses saying that my infection markers (CRP) in my blood tests were raised. They don't know the source of this high CRP, it could be an infection anywhere in my body, or a virus, but wanted to have me back and do more bloods and check things out. When I arrived at clinic they announced they had a bed for me at 3pm and the doctor wanted me in to assess things properly and get on top of this latest issue before it becomes more serious. Currently the CRP is about 115. It can get above 200, but normal is under 10. If you're interested see http://en.wikipedia.org/wiki/C-reactive_protein

I guess this sort of thing is to be expected but is rather annoying. In a way though it is reassuring to know that they are quick to respond and are going to sort it out - it is less worry-inducing than sitting around wondering whether we should be doing something. All sorts of questions run through my head: How ill should I feel? Is it side effects? Should I be tired? How much is down to the wound/surgery? How am I supposed to know when it is infection/rejection?

Today I actually feel pretty ok. The only real remaining symptom is a fairly high heart rate. My temperature is normal and I am fairly energetic. With a bit of luck the blood test taken this morning will show a reduced CRP and that I am moving in the right direction. The idea of the intense boredom of another hospital stay is rather dismaying, as is the idea of more IV antibiotics which tend to make me feel pretty ill in other ways, as discussed in previous posts. Still, there is no other option - I need to prepare mentally for another week or so institutionalised and Vicky will be 'enjoying' the A428 far too much again.

I'll be on a different ward - Duchess - and there is no guarantee I'll have any phone reception so I may be out of touch for a while. Vicky will keep you updated via the blog.

One month...yesterday

2009-11-24T07:41:00.003Z

I've just realised that yesterday was my one month anniversary of the operation. One third of the way to the first proper milestone at 3 months when some of the doses are reduced and some of the drugs stopped, hopefully.

Also, I slept much better last night and feel more human this morning. Hooray!

A tough night and day

2009-11-23T18:55:00.005Z

Ever since the clinic last Wednesday, where the Neoral levels were low in my blood test and so the dose was increased, I've been increasingly suffering from the side effects of the drug. So I've had shakes/tremors, a heart rate that won't drop below 100, sickness, tummy pain and a slightly raised temperature. Last night was very difficult - I really didn't sleep at all and at one point was on the verge of calling an ambulance as my whole rib cage hurt so much that I was really worried something very bad was happening inside. But my breathing and oxygenation was ok so I convinced myself it was just muscle stiffness and cramps related to the terrible stomach pain and diarrhoea I was also experiencing. With the temperature, I was too hot or too cold all the time so Vicky and I both had a hard time and are very tired today.

I rang the hospital at 8am and later in the morning went in and had a round of blood tests done as well as talking to the doctor, Jas, who agreed that it was probably the Neoral dose. He's reduced it from 200mg 3 times a day to 175mg. It may well take 24 hours or so for me to feel a bit better so I'm still shaking away and taking paracetamol both for the pain and the temperature. I just really need some sleep tonight so am hoping I can feel well enough. Jas said it is very difficult getting the levels right with CF patients as there are too many variables with the malabsorbtion in the gut added into the mix. Since I take Creon to digest the Neoral it depends how many I take with the Neoral, what food I eat at the same time, how many extra Creon I take to digest that food, whether I get estimations of calories and Creon requirement right and so on. It is especially difficult in the first three months when the levels of Neoral have to be kept high - eventually they will taper down and so the control and more importantly (for me at least) side effects will be less prevalent.

A bit of a down, then, on the rollercoaster of post-Tx experience. But I hope things will get better and I'm back to the hosp for the originally planned clinic appointment on Thurs, so they will check all the levels again then and further tweaks can be made.

A day of friends

2009-11-22T18:41:00.003Z

A brilliant day today where I saw lots of people close to my heart who I hadn't seen since before the 'event'. Thanks so much to everyone who came - it was brilliant to see you, sorry I couldn't speak very well or even have a decent conversation with some of you due to the colds but all the same it was lovely.

For those few people not in Cambridge today, some of my old friends from Norfolk came to Cambridge for lunch and a meet-up - something that had been arranged before the transplant. It was great that I was well enough to join everyone for a (freezing) walk along the river Cam.

Then I returned home and Vicky's sister Chloe had come to stay the night. Finally, Jonathan Bell, one of my oldest friends, popped by for tea on his way up to Norfolk. It was great to see him and catch up.

Obviously fairly shattered now but happy.

I thought I'd count up the actual number of pills I take in a day. Obviously this is skewed slightly by the fact that I have to take up to 13 of the Creon enzyme pills with each meal, but the grand total, assuming 12 Creon / meal is: 78!!

Number 1 (or is it 2?)

2009-11-20T19:24:00.002Z

Try searching for 'lung transplant blog' on Google! On google.co.uk I come out as number 1, on .com as #2. Wow. Thanks for all your interest!

The pills

2009-11-20T12:49:00.006Z

I had a comment on my last post from Mitch, in the US, who is about a month ahead of me in his CF/Tx experience. Hi Mitch and welcome to the blog!

In a blatant copycat move, having read Mitch's recent posts, I'm uploading a photo of my pills. The eagle eyed among you might be able to make out or guess the branding of the tray on which the drugs sit - Marlboro - ah the irony!

As you can see there are just a few different meds. At last count it was 20, but there is one more I need to add in when I feel my stomach is sufficiently settled to take it, because it tends to interfere in that area.

So, for the nerds, here's the list:

Neoral (cyclosporin): Immunosupression. Huge pills. Taste very bad, give me the shakes.
Cellcept (Mycophenolate): Immunosupression. Take with food as give you diarrhoea.
Prednisilone: Immunosupression, steroid. Make face puff up, give you osteoporosis. Nasty yet very effective drug. Used to counter bouts of rejection by giving high dose IV version. Will taper off and hopefully eventually stop this drug.
Alenronic Acid: This is an anti-osteoporosis tablet that is needed when you're taking prednisilone.
Omeprazole: Antactid to try and control acid reflux
Paracetamol: 2 tablets, 4 times a day. Essential!
Tramadol: Opiate pain killer - mainly just using overnight now
Itraconozole: Anti-fungal medication that will stop in a few weeks. I think this is against Aspergillus which is a fungus that can colonise the lungs, so they use this to avoid getting it in the first few weeks where things are very susceptible.
Furosemide: Diuretic (water tablet). Makes you wee a lot! Designed to keep the body free of any post-op fluid build-up and to keep the lungs nice and dry. The docs are forever examining your ankles to see if they are swollen - mine are ok. Downside of this one is it tends to flush out electrolytes such as magnesium and potassium - this is possibly what contributed to the heart rhythm problems I was having.
Amiloride: Another diuretic, but this one 'conserves potassium'
Metocloprimide: Anti-sickness pill - have pretty much cut this one out now.
Aciclovir: Anti-viral medication against the cold-sore herpes virus which is apparently a risk. Depending on screening tests on me and on the donor organs you are either given this or another drug. Not sure if this one stops or is a permanent thing.
Cotrimoxazole: An antibiotic, tradename Septrin, which is used to protect me against a specific pathogen - this will be permanent. One pill a day.
Magnesium: Supplement to keep levels right - may stop or may continue depending on my levels when I stop the diuretics.
Aquadek: A CF specific vitamin supplement - will stay on this one.
Calcichew: A CF calcium supplement - will stay on this also.
Creon: CF enzyme drug to enable me to digest food as the pancreas doesn't excrete enzymes in CF.
Nystatin: An anti-fungal mouth wash thing that is to protect against oral thrush, a side effect of the prednisilone steroids. This will stop as the pred dose is reduced.
Colomycin: Nebulised antibiotic - will hopefully stop if the results of the next bronchoscopy and biopsy are good. There is a chance it will continue permanently if the lungs show a tendency to hold a low level of infection.
Salbutamol: This is ventolin - same as asthmatics use in their blue puffers. I do this nebulised to keep the lungs open as the colomycin neb tends to make you tight - should stop when the colomycin stops.
Ursodeoxycholic Acid: This is the one I haven't yet started but will need to be on permanently. This is to do with CF-related liver disease and preventing its progression. CF blocks little ducts with sticky mucus - hence the pancreas problem - but this also applies to the ducts that secrete bile from the liver. The Urso is used to keep these open and halt the liver disease progression.

So, there you go - haven't you learned a lot today?

Clinic #1

2009-11-18T14:29:00.002Z

The fact I am sitting at home writing this means that the clinic appointment was fine and I haven't been re-admitted for any reason. They took some blood to check the levels of various of the drugs I am taking, did an X-ray, which was ok apparently and we had a quick chat with Jas.

There is nothing particularly interesting to say. We saw a few photos that were taken during the last bronchoscopy so I now know what my vocal chords look like - one of them is a bit bent which is why I can't make a very focussed noise and Jas reiterated that he's written to the ENT folks at Addenbrookes to get me an appointment. The inside of my lungs looked nice and pink and healthy and some infrared images of the blood flow showed the tissue of the lungs starting to get some decent bloodflow, indicating that the blood supply to the tissue is regrowing and should be ok (as some of you may remember they don't reconnect all the tiny vessels that supply the actual tissue of the lungs, just the big ones that take the oxygenated blood from the business end of the lungs, so they rely on the blood supply growing itself).

I was told not to worry about the short bursts of AF and as long as they stay short then they should fade over time. My bowels are gradually sorting themselves out, to the extent that I had a guilty treat on the way home; lunch in McDonalds. mmm, quarter pounder with cheese...

Next appointment will be Thursday next week, and then the following week I'll have another bronchoscopy and biopsy. As Jas said, for the first few weeks you feel like you are living at Papworth.

Post op day 25

2009-11-17T11:07:00.002Z

It feels like things are settling down quite well. I had a few more bouts of the dreaded AF, one on Saturday and about three on Sunday. These included one while I was sleeping on Saturday night where I was having a dream about cycling really hard and getting knackered and out of breath and then awoke to find my heart going for it at 160bpm. As soon as I hauled myself out of bed and walked around the room a bit it dropped back into sinus rhythm and was ok. It was fine all of yesterday and so far today.

I feel like it is very much related to the stomach issues I've been having - perhaps doctors out there could give their thoughts? The more bloated or burpy I've felt it seems to induce a stress and rumble that initially feels like the stomach spasming but then I recognise it as my heart. Is the sphincter at the top of the stomach called the cardiac sphincter for a reason?

I cut down the metocloprimide (anti-sickness pill) yesterday to just one in the morning and had fewer tummy problems later in the day. This could be complete coincidence but reading the Neoral patient info leaflet (Neoral is one of the immunosuppressants - keep up!) it does mention Metocloprimide as a drug you should only mix with Neoral under docs advice. So I'll stick with once a day and see if it continues to help.

In my nerdy way I just spent an hour or so doing a stock take of the 23 (!!) different medications I am currently taking, putting them into a spreadsheet with daily dose so I can predict when they will each run out. Frankly with this many pills to keep track of it is the only way...and hey, I love spreadsheets because I am totally sad.

The exercise is going well. I do 10 mins aerobic warm ups and then 15 mins on my exercise bike on the rolling hills setting, followed by my mobility stretches to try and keep the rib cage and shoulders relaxed. I'm having particular problems raising my left arm above my head - there is a very sharp pain in my left bicep - feels like a tendon being stretched to limit, and I can't quite straighten the arm. I will keep on gently trying and hopefully it will sort itself out as all the internal stuff heals up. The pain is still very significant, and it feels like across the sternum it is worse which I suppose is due to increased activity and a more normal life.

In general, then, I'm having a pretty ok time and gradually returning to the human race. It is a strange combination of tiredness and much improved lung function and I revel in walking to the shops or around the local parks/cemetry without getting breathless. I really don't want to start taking it for granted and so I make myself think of what it was like with the oxygen and the headaches and dizziness every time I go out. I remain incredibly grateful to the donor, the NHS, luck, Vicky, friends, relations and my own brain for allowing me to cope with such a traumatic series of events.

The only real niggle that I am desperately trying to ignore, and hoping like anything that will sort itself out, is my voice, which remains very husky and hoarse. Most of the time I whisper to try and preserve what there is of it. I try not to think of the eventuality of being whispering Willy for the rest of time, and to be reassured that it will probably come back. The cause is unclear - a combination probably of a long period of intubation and some nerve damage. Apparently one of the vocal cords is not moving quite right and so they don't quite close properly. Jas said that they only generally refer people to ENT surgeons after 12 weeks as it generally does recover, but he's going to start the referal process now anyway. My chances of singing again in any serious way are in the balance but I comfort myself with the fact that I no longer get out of breath playing the piano and so take great pleasure in that, and have found it doesn't hurt my arms or ribcage too much so I can practice already in all my copious free time.

Sorry this is such a long post - I'll report again tomorrow following the first clinic appointment.

Generally well with a little AF

2009-11-15T12:08:00.002Z

It is going ok so far, with a few ups and downs. Friday night was a difficult night - the sausages and chips were a bit of a stretch for my digestive tract I think, and combined with the dreaded Neoral (one of the immunosuppressant drugs) which makes you burp and fart in vast quantities, I was in a lot of pain and discomfort. "Take Actimel or Yakult" I hear you cry... Unfortunately both of these are on the high risk foods list because they reckon they could give my immunosuppressed body a gut infection! So I'm a bit stuck with a very delicate tummy at the moment and am doing my best to find the right foods to settle the stomach after taking Neoral. The other problem with Friday night was wound and back pain, mainly due to the fact that I had been sent home without any Tramadol - the strong pain killer - so was trying to get by on just Paracetamol which isn't really up to the task of dealing with the after effects of extreme surgery.

On Saturday we rang the hospital and Vicky, bless her, made a mercy dash to Papworth and picked up some of the magic Tramadol.

Last night was much more successful and although I didn't get more than an hour's sleep at a time I did at least feel reasonably rested this morning and was comfortable during the night. I swear that, although morpheine based, Tramadol has a slight stimulant effect and keeps your mind working far too fast to shut off and sleep properly.

The other slight worry is AF, the heart irregular rhythm/flutter thing, which has reocurred briefly both on Saturday and just now, each time for around a minute before flipping back into 'Sinus rhythm'. I have a pulse meter and oxygen saturation probe so I can at least monitor what's happening and my pulse rockets to around 150-170bpm and then simply drops back down to 70. It's very odd / uncomfortable and it comes with no warning whatsoever - both times while relaxing on the sofa (maybe it is trying to tell me to stay more active!). I rang the doc at Papworth and he said if it keeps doing it they may have to do a '24 tape' which is a 24 hour ECG to monitor how many times it happens. My potassium levels were OK on Friday, but Magnesium slightly low so I'm carrying on with Magnesium pills (yuk!) but at least they aren't as bad as Pottassium pills (super-yuk!).

Other than all that I feel really good - it is lovely to be home and I love being able to stroll to the newsagent for the papers and a pint of milk without having to put on oxygen and feel utterly rubbish after walking 100 yds. So hooray to that.

Home at last

2009-11-13T21:48:00.002Z

Just a quick blog to say that I have arrived home, had sausages and chips for tea and spent the evening watching telly. All very pleasant. I'm now very tired and slightly apprehensive about getting any sleep on a non-tilting non-hospital bed, but we still have the wedge they lent for last weekend so I expect I'll get a few hours. Once I can comfortably lie on my side, or move at all, things will improve.

I am back at the hospital for the first outpatient clinic appointment on Wednesday next week, and weekly thereafter, so I won't be far away from that place for a good while yet.

Drain, X-Ray, Home

2009-11-13T11:06:00.003Z

Well, it seems there were some crossed wires yesterday and the radiologist who drained some fluid thought he was taking a sample for analysis whereas Jas wanted all of the fluid drained off to give my right lung more room to expand, as well as taking a bit for the lab. So, looking slightly exasperated, Jas asked again this morning for the fluid to be drained fully and an xray taken.

Having all the fluid drained was a particularly unpleasant experience. Lots of local anaesthetic which hurt like hell as it went in quite deep into my back and then a larger needle and a system of plumbing that allowed the doctor to suck out syringes full of the orange liquid and then squirt them into a jug. He managed to collect 300ml in total which surprised him and me. So perhaps I now have an extra 1/3 litre of capacity in my right lung? I can't feel any difference.

This afternoon I'll have the xray, get some discharge talks and letters and be off home. 21 days post-op. This time 3 weeks ago I was an hour and a half out of theatre and in intensive care, still very much sedated. It's been quite a ride over the weeks but I'll be very glad to get home. Here's hoping it is easier and more successful than the weekend leave last weekend.

I'll have an appointment every week for the next 12 weeks so they'll be keeping a close eye on me.

Aspiration

2009-11-12T17:35:00.003Z

Will is a bit tired this afternoon, so you've got me instead. The ultrasound and aspiration went ahead as planned and some little vials of fluid have been sent off to be examined. We await the results but it sounds like we won't hear anything until tomorrow. The procedure wasn't entirely pleasant - although they used local anaesthetic on the skin, it's apparently difficult to anaesthetise deeper in, so it was painful (and just plain weird I think) for Will.

Not much more news really. The cycle of life on Mallard Ward goes on (we're starting to feel a bit like we're on Big Brother - It's Deeyh 20 on Mallard Ward and William is having fluid removed from his lung...). New people come in and go out and get moved into side rooms when they get diarrhoea. There's a lot of chat about constipation and wind and sickness and heart rhythms. There's a proper Norfolk chap next to Will who is turning into a bit of a liability. He asked me to bring him some cherry bakewells today.

I'm finding this period hard going. I've never been one for rollercoasters at the best of times but we're now stuck on one that we can't get off. Am pretty shattered and, although keen for Will to come home, anxious about the coming weeks and handling all this stuff without the reassurance of Mallard Ward. Think we're both getting rather institutionalised.

All clear!

2009-11-11T20:13:00.002Z

I received the thumbs up from Jas, my consultant, this evening to say that the biopsy of lung tissue they took during the bronchoscopy yesterday shows no signs of rejection. This is, as you can imagine, a huge relief and means I am on track for home release by the weekend. The one remaining issue is the fluid on my right lung which they will aspirate using a needle tomorrow morning. They use an ultrasound probe to identify the exact spot and then, with some local anaesthetic thank god, stick in a needle through my back/side and suck it out. Bit of a daunting prospect...

Generally today I have felt loads better. The sickness has pretty much gone, my FOB quotient (Full Of Beans) has been high and I have eaten my food, done 10 mins warm up and then a hard 15 mins on the exercise bike and have walked around the circuit of the ward about 20 times.

I also received a touching visit from two of the CF consultants and the specialist CF nurse all of whom have looked after me so well over the last few years. They were so obviously thrilled to see me looking well - I guess it must be a satisfying end to their job of keeping me fit and alive until it's time for transplant. (is that like a very serious Time for Trumpton do you think?) I now won't see the CF team except annually for a review and check up. Day to day care will be through the Transplant Continuing Care Unit.

Finally I received a further slew of cards today and I would like to thank you all once again for your time and generosity in sending these much appreciated missives. I think for some it is the first letter they have written for years - long may letter writing continue! (he says writing a blog...)

Thanks for your continued blog support - good night for now.

Day of the bronch

2009-11-10T12:45:00.002Z

Feeling much less sick today but now am starving hungry as have been nil by mouth since breakfast, ready for my bronchoscopy and biopsy this afternoon. I also had a liver ultrasound this morning just to check for obstructions in my bile ducts. I think this is because, like with lots of small tubes, CF can lead to blocking of bile ducts and I was on a drug to prevent this prior to the op that they haven't yet re-started. Anyway, it was fine which is good news.

The other problem is an accummulation of fluid outside my right lung which may be due to the op, rejection or infection. They are going to need to drain it using a needle (eek)! But they will wait for the results of the biopsy which will show if there is any rejection before doing it, so I guess it will happen on weds or thurs.

In short, a few stumbling blocks and it's unlikely I'll be home on Thursday but at least the sickness has eased. We are both in reasonably good spirits today.

...back in again

2009-11-09T13:10:00.002Z

After enjoying the morning and afternoon of Saturday at home I felt pretty awful after an afternoon nap and went on to develop really bad sickness and bloating in the evening. After a while it subsided enough to let me try and sleep. I got a few scattered hours and then, while lying in bed early Sunday morning, my heart went into it's fast irregular beat again. I rang the ward and we cut the weekend leave short and hot footed it back to Papworth.

The heart actually flipped back while in the car, but did it again at Papworth, and they gave me more of the vile potassium pills as my levels were low again.

Today I have been incredibly tired and very sick all day. It is extremely hard to feel motivated or to eat anything. It took me half an hour to slowly get a small portion of stew and mash for lunch, and for the first time I had to forgo the pudding with custard and just have the custard alone.

I have had a slew of bloods done today to look at everything and another chest xray. Tomorrow is the day of the bronchoscopy with a biopsy of some lung tissue, which they will study for signs of rejection. Please all keep your fingers crossed for this important milestone.

So a rather stressful time all in all. Not the best I've been and it is very hard to maintain a positive attitude or really believe it's going to be ok and get better. But V and I are doing our best.

At home!

2009-11-07T10:34:00.002Z

Vicky arrived to get me at about 9:30 this morning and, with the help of a wheelchair as a makeshift trolley for all the drugs, we made our way out of the hospital to the car. I had a bit of a worry about the fact that the seatbelt lies directly across the sternum wound and break, which was a bit uncomfortable, encouraged Vicky not to brake hard, and we set off.

So here I am at the dining room table typing on a laptop rather than iphone, which is a great deal easier, listening to radio 4 and about to tuck in to my first cup of decent coffee for 2.5 weeks. The caffeine load will probably send me manic after all this time!

I'm in a fair amount of pain but have all the strong painkillers with me so will stock up at midday and then try and strike the right balance of staying active and having a good relax. Looking forward to good food and then fireworks in the garden tonight.

Vicky is dead nervous with the responsibility of having me here. Poor thing. I'll try to convince her I'm ok...

Duck pond

2009-11-06T08:35:00.006Z

If the critical care photo was a bit much for you, here's a more soothing one of everyone's favourite duck pond, taken on a particularly grey and miserable day. It's actually much prettier than it looks here.

Photo from critical care

2009-11-06T08:22:00.005Z

Will sent me a text this morning asking me to post this photo, which he made me take shortly after being disconnected from his ventilator almost two weeks ago. Yes, all those machines are putting things into Will, or measuring things in Will. You can't see the four chest drains collecting large quantities of bodily fluids...

Royal Mail unblocks

2009-11-05T13:01:00.002Z

Vicky arrived to see me this morning with a vast array of cards and letters, and even one present (thanks Sarah and Julian for the jigsaw designed specifically to fit a British Standard hospital bed table). I just want to post to say I was overwhelmed by the efforts made and how well you all write! I was amused, moved and cheered no end.

There's been a fair amount of pain today but this is mainly down to the increased exercise. I managed 15 mins in the gym yesterday and it'll be the same this afternoon. Generally I am doing well and am allowed on home leave sat to sun. Vicky and I are both a bit worrried about sleeping without the posh electric tippy bed but they'll lend us a wedge to lie back against so I'll hopefully be ok.

Being at home will be amazing and I am looking forward to some decent food (although the jam and coconut sponge and custard at lunch today was really very good!). We are also planning to let off a few fireworks in the back garden as I'll miss tonight's display in Cambridge. When I say a few, vicky's dad who is a firework nut has apparently got slightly carried away with his purchasing today... Yay!

Today is the 2 week anniversary of the call and looking back I am amazed how fast it's all been, even though the minute to minute hour to hour reality is a slog. I am preparing my mind for the reality of a long rehab and possible bouts of rejection and infection that are likely to occur in the first 3 months. On the flip side the new lung capacity is already marvellous and so I am already more physically able than I was 2 weeks ago.

Thanks again for all the cards. If anyone feels moved to write more don't let me stop you...

Will's horoscope

2009-11-04T17:52:00.003Z

From Sunday's Observer Magazine:

Virgo: Although you have now passed through Saturn's portal, and should be feeling pleased that you have reinvented your act (or have merely survived!), there's little let up in your schedule. The throes of passion may have to be deferred for a week or two.

Ok, so I may have left out a line about allowing presentation skills to shine, but this Neil Spencer guy is good!!

That'll teach me

2009-11-04T04:39:00.002Z

After eulogising about a lack of pain I am having the most painful and uncomfortable night yet. Obviously the bliss was to be brief and very soon I found everything aching, starting with my rather overworked legs and then my whole torso and arms started screaming out. Coupled with which the room I'm in is suddenly very cold and so I have extra blankets and am wearing a jumper.

I've relented and asked for some more Tramodol, one of the opiate painkillers. Hopefully it will kick in soon and I'll be able to have another go at sleep. The combination of total body pain, cold and extraordinary levels of tiredness is awesome.

Breathing

2009-11-03T22:45:00.002Z

I lie here on my back - something I could never do before - and just breathe. Each breath fills my lungs completely. I've got the angle of the matress just right - there is no pain. I'm blissfully happy. I don't know if it is just the steroids that are leading to mood swings and that are being responsible for tears at every show of kindness, letter or nice comment but who cares. I'll just lie here and breathe, feel lucky and fill my head with possibilities. Night night all.

Chris ran!

2009-11-03T21:58:00.003Z

Chris will probably hate me for posting this, but here he is after crossing the finishing line on Sunday! Well done Chris!

Potassium

2009-11-03T21:29:00.003Z

No more drama from Will's heart so far, but they put him on some extra potassium for a while as his levels were a bit low and potentially contributing to the heart thing. This meant drinking vile tasting soluble potassium (think of those lovely orange soluble vitamin C tablets, minus the nice taste and healing sensation, plus an extremely "repetitive" quality - yuk). Apparently these are unanimously the most hated medication prescribed on the ward. Anyway, his levels are now fine so they have thankfully stopped this again.

Will has continued to embrace the exercise - more walks around the duck pond, plus a series of physical jerks with the physio and more biking. I think he's really enjoying starting to feel like proper exercise will be possible again. There's still some pain, and he's struggling a bit with his tummy and eating and feeling sick. They're trying a higher dose of an antacid, which could help. The cocktail he's on is quite likely to lead to problems with nausea and upset tummy, but these should hopefully settle with time. He has continued to be a star pupil is other respects, and has already reached Level 2 on self-administration of his drugs, meaning he requests what he needs. Level 3 might mean he gets his own key to his drug cabinet - can't remember. Feel like there should be badges to sew onto your pyjamas. The boredom continues, although ward life is pretty busy in some ways. He certainly appreciates everyone's comments and letters and Facebook entries.

I've started working half days this week, which means I can keep things ticking over at work while also spending time at Papworth. I want to make sure I can take time off when he first comes home.

p.s. I had the seasonal flu and swine flu vaccines today. One in each arm. As you can imagine, my slight upper arm ache (mostly the left arm thanks for asking) gains me no sympathy whatsoever at this time.

Back to normal

2009-11-02T08:45:00.002Z

Just to say that my heart returned to normal this morning around 7am after three surprisingly restful hours sleep. I will continue on the pills but the docs didn't seem at all concerned during the round this morning and said I can carry on exercising and get into the gym today. So I await the physio.

Irregular heart beat

2009-11-02T01:10:00.000Z

I'm writing this from my hospital bed at 10 past 1, on my phone. I was trying to get to sleep this evening, always a challenge, and being frustrated by my throat being weird and trapping air and having sickness and indegestion - all annoying side effects. I felt like my whole stomatch started to palpipate but then realised my heart was very fast.

They stuck me on the heart monitor and I was running an irregular beat at around 160. It feels very scary. Did an ECG and called the doc.

Apparently 30% of people who've had heart surgery get this, a bit less for lungs but my op did involve moving the heart around, being on bypass for a while etc. So it is now complaning. They have given me a tablet that will be the start of a short course and also gave me some pottassium as low electrolytes can also be responsible and I've had some diahorrea.

What I have to do now is try and relax and hopefully it'll kick back over to its old rhythm. If it hasn't done in a couple of days (!) then they'll take me to surgery and give it a shock.

Guess I should actually do the relaxing now.

Other than this event things as you've learnt from vicky have been going ok. It's all very weird as experiences go - not sure I'd recommend it, bt the results are looking to be quite ok so far. I'll do some propped blogging of how it all felt once I get home, which mght even be end of this week!!!

Thanks for all the messages and comments. Love to all. Wim

Changeover day at 9 Blossom Street

2009-11-01T20:31:00.005Z

Not going to write much this evening. Not a great deal to say but Will continues to do ok. He did two sessions on the exercise bike today and continued the perambulations, definitely upping the speed since he first started post-op. Ellie came up to see him, and my parents both dropped in as today was Vicky-sitting changeover day. My dad is just back from a three week holiday in South Africa and has come to take over, while my mum goes back to work. She has done a heroic job of cooking for me, tackling long overdue tasks like defrosting the freezer and cleaning the oven, and embracing missions to go and buy Will various permutations of pyjamas. Planning to pop into work tomorrow, just for the morning, to touch base and check there are no population forecasting emergencies.

Good luck Chris!

2009-10-31T21:29:00.003Z

Will's long-time friend / honorary cousin, Chris, is running to see off CF tomorrow. What timing! You can sponsor Chris here. Good luck, run fast and enjoy your lungs Chris! Will & Vicky xx

Brighter day

2009-10-31T20:10:00.002Z

Will was more cheerful today and has been enjoying hourly perambulations of the ward as part of his fitness regime. Being Will, although the instructions were to do this between 9 and 5, he started at 7.30 and did his last lap when seeing me off at 6.45. He also did 5 mins on an exercise bike at very low resistance. His mum and dad came up to see him and were, I think, pleased at how much better he seemed than when they last saw him. Overall the boredom is really starting to get to him, but he's frustrated at how quickly he tires, how rubbish his voice still is, and how difficult he finds it to read. We think the latter is related to the painkillers he's taking - something called tramadol for you medics out there - along with some dizziness and tremors. We think the op may have damaged his vocal cords a bit - we were warned this was a possibility. They may well sort themselves out over time but, if not, a minor op in the future may help to free things up. I think he really needs to properly rest his voice, but that's tricky when you are in hospital and people keep asking you how you are. He is desperate to post messages on the blog, but doesn't really have the technology or stamina. He's starting to note down memories of the last week to make sure that he doesn't forget things before he shares them with you all.

One thing I wanted to share with you was a little about Will's last day with his old lungs. His last day at work involved a day-long hair straightener brainstorming session. As far as I can work out, this involved a room full of men wearing fake long curly hair and practising the straightening action. Will managed to strain his shoulder while doing this, such that he spent the evening wincing and complaining and demanding that I massage ibuprofen gel into him. I wasn't overly impressed by the lack of manly stoicism, and so wasn't particularly nice to him. So there's a lesson for all you husbands and wives out there! On the plus side, Will's sister and her husband had sent Will some amazing steaks as a belated birthday present, and we ate one each that evening. As he drove off to Papworth after we got the call, he remarked that he was pleased with his "last supper". I think if he'd known though, he'd have eaten it dripping with blood, as that pleasure is now a thing of the past.

Will goes outside

2009-10-30T20:54:00.003Z

What a week - am completely shattered this evening so this'll be fairly brief. On balance a better day than yesterday. Will even made it outside for his physio session. He walked through the hospital and made it three quarters of the way around the infamous duck pond before taking to the wheelchair. The physio said it was the quickest she'd ever had a lung transplant patient outdoors. I'm sure she says that to all the boys, but, as those of you who know Will well will understand, this made him happy. Achievement is important. She also mentioned a girl who had the same operation as Will who climbed Snowdon six months post-transplant. Will said he'd do it in five, though we did realise the weather would be against us. The pain continues, as does the endless quest for a comfortable position to sit or lie in, but he's lovely and pink and oxygenated-looking. I'm sure I'll post the wound photos at some point, when I'm up to tackling the technology.

Some people have been wondering whether we know anything about Will's donor. We don't at present, and I don't think their family would know anything about Will. At some point I think we'll have the option to write to the family, via the transplant coordinators, which I'm sure we'll do. It's hard to get your head around the fact that someone died, probably unexpectedly, and somewhere a family is having a completely awful time. We do talk about it, and I think Will probably thinks about it a fair bit, but it's hard to know what to feel really. I guess we feel hugely grateful that the family was able to be so generous with very little time to think about it or come to terms with their own loss, with an added feeling of responsibility that we'll try to do our very best by these lungs.