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!

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...

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.

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!

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.

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!!

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!