Sunday, 26 December 2010

Christmas blows

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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Friday, 17 December 2010

Lost biopsies

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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Tuesday, 9 November 2010

Just a virus then

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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Wednesday, 3 November 2010

Fobbing indecision

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...

Sunday, 24 October 2010

First year milestone passed

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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Friday, 22 October 2010

Donor Day

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.

Sunday, 26 September 2010

Another set of holes

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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Friday, 24 September 2010

Definitely not fun(do)

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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Tuesday, 21 September 2010

It is done

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

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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Monday, 20 September 2010

Here we go again

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.

Friday, 17 September 2010

Happy days #1

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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Friday, 10 September 2010

Gout - isn't that a bit medieval?

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!

Thursday, 2 September 2010

A stressful time

Reasons to be stressed:
  1. 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...
  2. 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!).
  3. 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.

Wednesday, 25 August 2010


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:

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!

Saturday, 21 August 2010

Day 2 - Cycling

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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Friday, 20 August 2010

Table tennis done...

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. 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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Wednesday, 18 August 2010

Radio fame and the games

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).

Start listening at 1h18m18s.

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

Tuesday, 17 August 2010


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: 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.

Thursday, 5 August 2010

Blows and bad dreams

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.

Friday, 23 July 2010

Home on my 9 month anniversary

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...

Thursday, 22 July 2010

Still in here

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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Wednesday, 21 July 2010

'minimal A1'

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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Tuesday, 20 July 2010


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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Monday, 19 July 2010

Rejection...or just a cold

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

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

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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Sunday, 18 July 2010

The joy of steroids

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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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!

Friday, 9 July 2010

Campylobacter....the return

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 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...

... 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...

Friday, 2 July 2010

CF Annual Review

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! 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.

Wednesday, 23 June 2010

8 months

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. 

Sunday, 13 June 2010

100th post - how far we've come

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.

Friday, 11 June 2010

An observation on a cold

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.

Tuesday, 8 June 2010

Quick update

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.

Thursday, 3 June 2010

FOBbing 'eck!

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...

Wednesday, 2 June 2010

FOB time

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.

Friday, 28 May 2010

Diagnosis and (hopefully) Murder!

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.

Monday, 24 May 2010

Poor Will...

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...

Saturday, 22 May 2010

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

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.

Saturday, 15 May 2010

clinic update

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!

Monday, 10 May 2010

the experience continues

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!

Saturday, 24 April 2010

Looking back from 6 months out

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...

Friday, 9 April 2010

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

...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 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!