Monday, 30 November 2009

Clinic and bronchoscopy tomorrow

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!

Friday, 27 November 2009

Home again and back online

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...

Wednesday, 25 November 2009

Back in to hospital

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

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.

Tuesday, 24 November 2009

One month...yesterday

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!

Monday, 23 November 2009

A tough night and day

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.

Sunday, 22 November 2009

A day of friends

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!!

Friday, 20 November 2009

Number 1 (or is it 2?)

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

The pills

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?

Wednesday, 18 November 2009

Clinic #1

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.

Tuesday, 17 November 2009

Post op day 25

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.

Sunday, 15 November 2009

Generally well with a little AF

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.

Friday, 13 November 2009

Home at last

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

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.

Thursday, 12 November 2009


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.

Wednesday, 11 November 2009

All clear!

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.

Tuesday, 10 November 2009

Day of the bronch

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.

Monday, 9 November 2009

...back in again

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.

Saturday, 7 November 2009

At home!

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...

Friday, 6 November 2009

Duck pond

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

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...

Thursday, 5 November 2009

Royal Mail unblocks

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...

Wednesday, 4 November 2009

Will's horoscope

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

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.

Tuesday, 3 November 2009


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!

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


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.

Monday, 2 November 2009

Back to normal

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

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

Sunday, 1 November 2009

Changeover day at 9 Blossom Street

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.