Monday, 21 December 2009

The dreaded Christmas shopping

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

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

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

Friday, 18 December 2009

8 weeks and an all clear

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

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

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

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

Wednesday, 16 December 2009

Bonus super-speed bronch

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

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

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

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

Tuesday, 15 December 2009

Further developments

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

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

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

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

Bronch tomorrow

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

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

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

Wednesday, 9 December 2009

All the pills

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

Just call me Mr. Pharmacy...

A quick update

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

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

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

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

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

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

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

Wednesday, 2 December 2009

Bronch and results

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

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

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

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

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

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

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

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

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 http://en.wikipedia.org/wiki/C-reactive_protein

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

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

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

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 google.co.uk 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

Aspiration

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

Breathing

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!

Potassium

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.

Saturday, 31 October 2009

Good luck Chris!

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

Brighter day

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

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

Friday, 30 October 2009

Will goes outside

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

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

Thursday, 29 October 2009

Rough night and feeling the slog

Will asked me to report back that his morphine experience was less than satisfactory. It made him have weird and scary psychodelic thoughts and all the sounds on the ward were turning into threatening music in his mind. (I like to think this says something about his inner musical genius.) It was a tough night with emergencies elsewhere on the ward, so there was lots of disprution and stress and Will didn't really get any sleep.

Will has now been moved to a side room, which commands an enviable view of the hospital duck pond (nicer than it sounds) and autumnal trees. It'll be great once he starts feeling well enough to appreciate it. We heard today that he has pseudomonas in his new lungs. He had this bug in his old ones and it's likely that it got transferred from his sinuses. Apparently 75-80% of CFers retain it after transplant, and they just try to hit it fairly hard and it's not usually a particular problem. So the IV antibiotics are continuing and he's nebulising colomycin, which he knows of old. He had another bronchoscopy today and Jaz, the consultant chap, was happy with what he was seeing, saying that the lungs were looking pretty healthy really. At the moment the hardest thing for us both is the psychological battle - it's hard to keep the faith that things will get better and easier. It's so tempting to expect too much too soon, but it really is very early days and everyone always told us it would be hard. There was mention of getting Will to the gym tomorrow, and I think activities like that will really help.

So, a rollercoaster of a day, but I left Will a few hours ago looking reasonably relaxed and settled (and he had perked up to the extent that he made me take photos of his wound!), so I'm hoping it'll be a better night for him. At least he'll be calmer in his new executive suite. Keep up the thoughts and prayers folks.

Wednesday, 28 October 2009

Pain, Rules and Facial Hair

They stopped Will's epidural today, and as his chest came back to life so did the pain. He's quite a bit more mobile now, so is able to move on to chairs and stand up, but is still not very comfortable wherever he puts himself. He was particularly worried about getting sleep tonight, so they have given him some liquid morphine. Will was quite excited by this foray into crack usage, but not as excited as the doctor who prescribed it, who launched into an almost Bollywood-esque rhapsody on how it makes you "fly". Hmmm. Am just hoping Will will get more sleep tonight. Sleep has been tricky for the last two nights - they keep wanting to do outrageous things like check his blood pressure, temperature and oxygen saturations.

I'm a bit grumpy this evening cos of the ward's Rules. I'm so used to CF, where they are happy for me to be there all the time and they don't enforce the mobile phone ban. On Mallard it's all about visiting hours and no mobiles and there's only one telly. It's bad of me to be grumpy as I know they are actually being more lenient with me than truly ordained by the Rules (apparently "Transplants" are treated a bit differently from your common or garden bypasses and pneumothoraxes and whatever else they get up to at Papworth).

Anyway, not much more to report, though Will managed to walk a few circuits of the ward today. And he didn't have his shave after all because he took one look in the mirror and decided he liked what he saw. So they didn't remove his vanity with his lungs. I've also bought him a little personal radio, so he can lie there and listen to classic fm (not too challenging) and try to relax.

Tuesday, 27 October 2009

Settled on the ward

Hi folks. Sorry I haven't posted for a few days. It's all been pretty exhausting and head-messing. Will is now settled on the ward and having more pipes and lines removed each day. He's off the oxygen now when he's at rest, and has started gentle physio. He had a bath today (a rare occurence even at the best of times) and is looking forward to a shave tomorrow. His throat is still sore from the intubation, but he is more comfortable in other respects. They are stopping the epidural tomorrow though, so there may be more actual pain again in the coming days.

Will gets tired very easily and finds it difficult to talk, so he isn't really up to visitors. Our nice friend Anice dropped off a letter for him today, which he really appreciated, and we've had some lovely cards, so if any of you have a few minutes to put a few words to old-fashioned paper and entrust them to Royal Mail, he'd love that. Send anything to our home address: 9 Blossom Street, Cambridge, CB1 2NQ. I'll take them in to him. There's also a ban on flowers and plants on the ward, just in case any of you were feeling inclined in that direction!

Thanks again for all the lovely messages - it really helps to know you're all thinking of us.

Monday, 26 October 2009

Well, here I am on the ward

I'm writing this just to say that I'm out of critical care and onto the ward

a few false alarms with leaking drains and the need to do a bronchoscapy to Hoover
up some sputum. Feel pretty uncomfortable and it's v hard to concentrate so
keeping this short. Hopefuly get mobile in next few days lots of physio work.

Thanks for all the lovely messages.

Will x

Saturday, 24 October 2009

Another day down

Phew, pretty exhausted this evening. Will has been much more awake today. He even managed some jelly and ice cream for breakfast. He was in a lot of pain for much of the day but got an epidural at about 4pm which helped a lot. His throat is very sore from the ventilator so he can't talk much - and is too tired to do much talking anyway - but he's now very happy to lie there and be talked at. He did say earlier that he could already feel how different his breathing was - no chest tightness and he doesn't have to try at all when he breathes out. I've certainly never seen him breathing so slowly or effortlessly. We expect him to be in critical care another day or two and then hopefully he can move out onto the ward.

What a 48 hours! Don't know quite which way is up or where I am or what time it is, but we're doing ok. Some more sleep will be a very Good Thing. Seems so weird that this time two days ago we were just finishing Masterchef and heading off to bed as normal. Though I have to say that I felt very weird and unsettled on Thursday evening and had been "nesting" rather bizarrely. Re-arranging furniture and sorting out cupboards. When I did the washing up I left some greasy pans and thought to myself "hmmm, if we get the call tonight I'll be really annoyed to come back to these in three days' time". Somehow when the phone rang I wasn't entirely suprised.

It's absolutely fantastic that Will had been really working at the exercise for the last three weeks, and when they took bloods just before the op his infection markers were very low. So he went into all this in the best possible state he could, which should really help in the days to come.

Quick update

We all finally got some sleep last night. Ellie and I ended up at a Travelodge on the A14 while our families colonised the house in Cambridge. We left Will at about half eleven. He was off the ventilator and breathing for himself. He's on loads of O2 so he doesn't have to work too hard, but his blood gases are looking good and his new lungs seem to be doing their job. He was pretty awake by the time we left and was asking about what had happened and even cracking a few jokes. He's in a lot of pain but they should be able to control that better the more awake he is. There's still a long way to go but he's doing as well as we could hope. Thank you all for your lovely messages. When I get a chance to use a computer I'll share more of the ins and outs of the last 45 hours. This this has been the weirdest and scariest thing ever - still can't believe it - but the staff at Papworth have been completely fantastic. More love to you all. Xxx

Friday, 23 October 2009

The Call

So it has happened. We got the call at midnight and Will was in theatre from about 2am. Am writing this on Will's iPhone so can't manage much. His lungs are out and they're plumbing in the second new one now. Should be out of surgery in another hour or two. They are very happy with the new lungs and how things are going, so we are feeling positive. Will's sister Ellie is here with me and various parents are on their way. Can't believe it's happened. Very considerate to wait until after the Masterchef final.

Will post again when I can and when there's more news. Keep everything crossed for us, but know that we are doing ok and are in good hands.

Lots of love to you all xxx

Wednesday, 21 October 2009

All's well

Sorry there have been no posts of late, but really not a lot to report. We are having a normal, fairly uneventful time. I am feeling well and have been for a few weeks now, to the extent that I have taken to riding my exercise bike on a daily basis. I bang on 5 litres/min of oxygen, wait till my sats get up to 95% and then I can happily do a reasonably hard 15 mins exercise before I dip down to 90%. I'm gradually ramping up the time and resistance and want to get to 20 mins/day in a couple of weeks. The exercise is important, and will hopefully set me in good stead for getting mobile quickly and easily after the op.

Increasingly I forget about the transplant and it is very easy, when I'm well, to feel like it would seriously ruin my day if they called. It's amazing how used to all the CF paraphenalia you can get, feel generally happy with life and your lot and forget how 'ill' you are meant to be.

On a separate note, work takes me into new and slightly bizarre territory with a project I just sold to design the next generation of hair straighteners for the leading brand of these things (who I can't mention here for confidentiality reasons). So my mind has been in a rather female space recently - considering superior straightening, shine, flick and curl capability, look, feel and ergonomics of a mass produced consumer product. Amazingly they make 70,000 a week, and sell them for £120. I won't tell you what they cost to produce, but it is shockingly little! As they say in the States - 'do the math' - it is a license to print money.

Thursday, 8 October 2009

Documentary about Alex Stobbs

Well, just watched the second half of the C4 documentary about the ex-Eton schoolboy, now King's Cambridge student Alex Stobbs. It was quite a hard thing to watch as his life has been so similar to mine was in a lot of ways (although of course, no Eton for me).

I recognised lots of people - the music master Ralph Allwood from Eton, who I remember from a Choral course that I did there when I was 15; and then the rather staged-feeling team meeting at Papworth where I knew all the faces and most of the names.

It is clear to me that the poor chap has it a lot worse than I did when I was 19. He's using oxygen already and the docs are saying a bad infection could kill him. When I was 19 I was busy getting very drunk and enjoying all that University has to offer. I didn't conduct the Matthew Passion, but did sing it every night for a week, starting at 10pm and finishing at 1am, on tour in Gran Canaria (of all places).

I was upset at seeing him unwell, angry that the bloody thing can mess up other people's lives and ambitions as well as mine. No, that's too strong, too bitter; my life has been pretty amazing and I am obviously extraordinarily lucky in a lot of ways, but damn it I really want to go to far flung places, windsurf, climb a mountain, sing properly again, not get out of breath playing the piano... So, yes, I cried seeing Alex coughing away in hospital - it holds up a mirror to your own problems and intensifies them, and I feel so very sorry for him not even getting it as good as me.

My philosophy, again, is exactly the same as his - do your best to be normal. I just hope that he reaches, as nice doctor Helen Barker put it, 'another plateau' and is given the opportunity for a transplant. Maybe I'll get in touch with him in a month or two once the publicity has died down.

Wednesday, 30 September 2009

Odds and sods

A few bits of news and other thoughts after a couple of weeks of silence:

For those of you interested in the latest in CF care, I have started a new (and extra) treatment. It's a nebulised saline solution, but not 'normal' saline, which is 0.9%, but 'hypertonic' saline at 7%. Nebulising means that the liquid is turned into a mist which I then inhale. To get through 4ml of the saline takes about 10 mins. Imagine swimming in the sea (you can pick your favourite sea - mine would be at Loutro in Crete, see below) and getting a mouthful. Then swallow, and do it again and again for 10 mins. Ok, it's not that bad, but it is pretty darned salty! The main effect of doing this is that it makes you cough - it catches the back of the throat and in the lungs and a few fits of coughing later and the gunge starts to flow - and that's the point. It seems to have an amazing ability to move even the most stuck sputum (to use the official term for the gunk that lives in my lungs).

The docs don't actually know how it works. There are various theories - at the simplest end, the fact that it makes you cough is enough to move the gunge, at the other end it might be to do with the saltiness drawing water into the sputum in some osmotic way (I guess...) and so helping thin and rehydrate it, making it easier to move. Of course, if you've done your research, you'll know that the base cause of CF is a blockage in the chloride/water channel in the cell meaning the sputum doesn't get enough water and so becomes thick and sticky. Sticky sputum makes a great breeding ground for bacteria and, hey presto, before you know it you have a resident biofilm infection that is impossible to remove entirely.

Anyway, the hypertonic saline is helping. But it adds to my already cumbersome morning routine which now goes something like this:

1) Nebulise DNase (to help thin sputum by breaking down long strands of DNA in it)
2) Wait a bit for DNase to work (should be an hour, but not enough time for that...)
3) Nebulise hypertonic saline
4) Cough like hell. Use oxygen to stop fainting during coughing fits... Once reasonably clear (i.e. hard to force up any more sputum)...
5) Nebulise antibotic
6) Wash mouth out several times as antibiotic tastes absolutely foul and coats mouth with white yuk
7) Take Vitamins (2 types), antacid pill, antibiotic pill (Azithromycin - commonly used to treat Chlamidiya (sp?)), mucodyne (to help thin sputum...again - yep they really are throwing everything they've got at me...)
8) Take 3 types of inhalers to try and relieve chest tightness (a total of 7 puffs, each to be held for 10 secs)

and in short that is why it takes me an hour and a half to leave the house in the morning, which is frankly pretty good going.

On another note, I was meant to be in Papworth on Monday night for a follow-up Sleep Study after the marginal result 6 weeks ago. When it came to it I was feeling really grim and decided was too ill to be in hospital (ah, the irony..), so rang them to cancel. I spent Monday afternoon in bed after an abortive attempt at work on Monday morning, worried I had a rapidly developing chest infection. But then felt better Tues and instead Vicky was the one laid low and in bed all day yesterday. So it must have been some kind of short virus, meaning I can escape the prospect of IV antibiotics for a little longer.

Finally, if you are bored with your current remote control why don't you buy a magic wand from a company that a friend from University has set up with a colleague. See http://thewandcompany.com/

Thursday, 17 September 2009

Chris is running to see off CF

My very longstanding friend, virtually honorary cousin, Chris Sturdy, is running a half marathon in a few weeks and is aiming to raise £75 for each mile he runs. The money will be split between CF and two other charities. You can sponsor him here. He has already shelled out for a second pair of trainers having worn through the soles on the first ones so I'm sure he would appreciate your support!

Tuesday, 15 September 2009

Devon and a certain piano

Leaving Minehead we took a fabulously picturesque road over Exmoor and after 40 mins or so arrived at the beautiful house of some family friends of Vicky, where we were to stay the night. These friends happen to run a music festival (The Two Moors Festival) which became famous a couple of years ago when the piano, a Bosendorfer grand, which they'd just bought at auction fell off the back of the delivery lorry onto some granite steps at their house. The Mail still have the story online here.
Anyway, the story was resolved wonderfully when Bosendorfer offered to donate a piano to the festival (partly we guess because of the huge amount of publicity the story had generated). Of course, the most expensive piano was requested, which in Bosendorfer's case is the quite extraordinary model 290 Imperial at a cool £85,000.

So to cut a long story short, I asked if I could have a tinkle on the ivories and they said 'of course...it needs playing'. So I had the rare opportunity to play what many consider to be the Rolls Royce of pianos. And it was amazing.


The 290 Imperial. All 9'6" of her...


...and me playing

The unique thing about this piano is the extra 9 keys at the bottom of the bass, coloured black rather than white so as not to put the player off. Very few pieces have been written to use these keys. When you play these notes it is almost difficult to hear the real pitch of the note, they just grumble. They are supposed to add colour to the piano's sound as they sympathetically resonate with the notes being played. One of the pieces written specifically for the piano is Debussy's La Cathedrale Engloutie - I only found that out once I'd got home and was reading up on the piano, but happened to play it when I was having a go - mainly because it is nice and loud!


Extra black keys.

Monday, 14 September 2009

The Skoda of Adventure: Four Go To Foxes Earth

A happy weekend this one. Maddy started at Foxes Academy on Saturday and Will and I went down to Minehead in Somerset with her and my mum. After tearful goodbyes to the house, the dogs, sister Chloe, the cat etc etc, we headed off in mum's shiny new car, bound for the seaside. When we saw Butlins we knew we were almost there. Maddy's new accommodation is at Foxes Earth, along with eight other female 'learners'. It was fantastic to see where she'll be living, to help her settle into her new room, and to feel what a relaxed and positive place Foxes is. As soon as we got there Maddy was super-cool, and there were no tears at all when we left her to it. (Well, I nearly cried, but managed to get a grip so as not to embarrass her.) It was a completely beautiful day and we managed a potter on the beach in the sun before reboarding the Skoda, just three of us this time, for the next part of the Adventure...

Recording the moment
Maddy's new home

Friday, 4 September 2009

35 eh?

Thank you for all your birthday wishes via email, snailmail and text. I've had a lovely day off work doing nice things involving Michelin starred restaurants and relaxation.

In a small note to bring the blog back onto its original footing, the current life expectancy for CF-ers is 31, so I am now officially 4 years ahead of the curve and aint slowing down in the near future! Hurrah!

Increasing fame...

ok...and the Independent, Mail, Mirror and Express!

Vicky is famous!

Vicky hit the mainstream media yesterday when the Cambridge Evening News ran a story about the population explosion in Cambourne near Cambridge. Then it got into the Telegraph and this morning we discover it ran in the Sun!

Vicky is quoted and is obviously annoyed that a) she sounds quite boring and b) that they took various numbers out of context, but I think that having your name and quote in the Sun is something to be proud of!

Monday, 24 August 2009

No news

Talking of no news reminded me of this by Adam Buxton: No News

If you haven't seen his stuff, he's off the legendary Adam and Joe show and I think my favorite is Songs of Praise.

Sunday, 23 August 2009

No news to speak of at all

Well, it's been a while since we last posted, so here's a quick update to confirm that nothing exciting has been happening to us. In case you've been on tenterhooks, Will's sleep study was borderline, so they are going to see him again in six weeks. We had a pleasant trip up to Will's mum's last weekend and squeezed in an ice cream on the pier in Cromer. We've each managed to catch up with some friends. I cut back the wisteria today. Will made an Economical Cut and Come Again cake then threw it across the kitchen while removing it from the tin. So August is a slow news month on willslungs too...

Friday, 14 August 2009

Great non-transplant-related news

While poor Will was hanging around in Papworth sleep-study-hell this morning, I got some brilliant news. A while ago my youngest sister Maddy, who has Down's Syndrome, was offered a place at Foxes Academy, "a training hotel and catering college for young people with mild learning disabilities". This morning we got confirmation that the local authority has agreed to fund her to go. This means Maddy will get to have a three-year, away from home educational experience, like most of us did when we went to university. The aim is to equip her with skills to maximise her independence and employability. But it also means she'll get to make more friends and do a lot of the 'hanging-around' type social stuff that we all enjoyed at uni. Anyway, Foxes seems to be a fantastic place and it's a great opportunity for Maddy. So it's not just hurrah for the NHS, but hurrah for Oxfordshire County Council and Connexions too (and it's probably not too often you hear people say that!).

Thursday, 13 August 2009

Officially on the list!

Just rang the transplant team and they apologised for not giving me a call at the end of last week - "it was bedlam here" - more euphamisms for transplants going on I guess...

Anyway, the bloods came back "fine and dandy" with nothing to worry about, so I guess that means still no antibodies. I was apparently listed on Friday afternoon. It's nice to have the uncertainty removed and is a weight off my mind. Now Vicky and I can try to just get on with stuff and forget about it all until the call comes.

...but I do have to go to Papworth again today. Somehow appointments get spaced just close enough to each other so that you never feel like you really escape the place - there are always at least two appointment letters on the table at home. Today and tonight I have to do the most unpleasant of appointments, a sleep study. This is done to check your blood gases overnight, which tends to be when people breathe more shallowly. Shallow breathing + CF can lead to increased CO2 in the blood, which makes you wake up with awful headaches and can have serious detrimental effects over a long period. Because of this, and as a result of previous studies, I've been using a ventilator overnight for a few years now, which means wearing a mask over my nose and being attached by a hose to a machine that blows air, triggered by my breathing, to help fill my lungs better. This has worked well and made my CO2 levels normal. The possible problem now is that my rest Oxygen levels are getting quite low, so they may need to add Oxygen into the mask overnight as well. Doing that would mean installing an Oxygen concentrator the size of a fridge into our house and running a tube from it to me at night. This would also make travel and nights away more difficult, although I'd probably be able to manage without it for a few nights as it won't be transportable. I hope so anyway...

So we'll see - I might be ok and won't need it. The sleep study is horrible because you are in a large ward with lots of old men with emphysema, generally overweight, ill, dying people. It's a horrible atmosphere, the nurses aren't nearly as nice as in the CF ward and there is a lot of waiting around for anything to happen. All that combined with the fact that they give you an arterial blood gases test, which involves sticking a needle vertically into your wrist, directly into the artery, and can be one of the most painful things ever as there is a nerve very near the artery that they sometimes hit. Ouch!

You may find it difficult to understand how the prospect of something like a lung transplant could give me joy, but it really does. Without that light at the end of my (and, of course, Vicky's) tunnel I really don't know how I'd manage with the gradual decline in health, increase in equipment and decrease of freedom. From time to time I have dark thoughts about how I would be coping if I hadn't met Vicky and was trying to cope on my own. It is truly scary and I give thanks to the fates every day for bringing us together. Together we are incredibly strong and my love for Vicky knows no bounds.

Thursday, 6 August 2009

Commenting and Following

We love it when you leave comments on the blog and we'd also love to know who's out there reading the blog! If you have a gmail or yahoo email account you can use that to sign in as a follower. Just click the "Follow" button. If you don't have such an account already, there's then a link to Google Friend Connect, which doesn't look too much like it would steal your life from you if you joined it. You can use these accounts to comment too, which tells us who are you are, or you can make a comment anonymously without any such technologies. Anyway, our lives aren't that exciting really, so do contribute your tuppence-worth. Comments, questions, thoughts, easy recipe ideas (no really!!), top ten tips for a zen existence...