Up The Farway Tree

Day 14 - Thursday

Despite taking all sedatives on offer, I had another rough night with quite a lot of pain in one particular area. It's a pleuritic pain - which is very sharp pain when you breathe in, cough or move. The doc said that he could hear a 'pleural rub' when listening to my chest which just indicates that the pleura (layer around lungs) is inflammed. This is very common post transplant, and todays xray showed no new signs so its just a case of waiting until it settles down. The pain team did review me however and increased the drug for nerve pain (which should help me sleep tonight), as well as encouraging me to take the oramorph as required at the moment to ensure I continue to breathe deeply and move around more. I have been taking this today, so the pain has been much more under control and my oxygen levels have also improved as a result of this. Another big positive is that my temperature has remained settled all day, so we seem to have overcome that small blip.

Exercise wise, I was able to attend the gym today with some other post transplant patients. We all moved round in a circuit, each having a go on different machines. I did some time on the exercise bike, 2 different machines for leg muscles and 5 mins walking on the treadmill. The upper arm exercises are still limited while the wound is healing. It was a good change getting out of my room to exercise and it is more motivating when you can see other people exercising, as you want to keep up (or is that just me?!)

Enjoying an ice lolly after the gym (face mask making it kinda tricky!)

The only piece of bad news I had today was that some routine testing has shown that I have C. Difficile infection in my bowel. This is an infection caused my the use of lots of antibiotics (which I was on pre-transplant) and can be quite serious when you are immunocompromised. At the moment I don't seem to have any symptoms from it, so they are not too worried and are not actively treating it. The drug they use to treat this infection is one which I was on for the first week post transplant anyway, so this might have been enough to deal with any infection that was lurking. It is also possible to carry this bug without being affected at all, so at the moment they will just keep a close eye on things. The only downside for me is that I now have to be barrier nursed, which means no wandering around the ward (although I can still go outside) and I suspect I might not be allowed back to the gym either, which is quite disappointing.

On a more positive note, I was moved from HDU today to a regular ward because I was the fittest patient in HDU - this can only be a good sign! I was quite nervous about leaving the comfort and saftey of HDU but since I was self medicating and self caring anyway it shouldn't really make much difference. The only annoying thing is that I am not allowed to use the showers in this ward as they run of a water tank, where as the transplant unit showers are electric, which have a lower risk of carrying bugs. I'm not quite sure how I am meant to wash my hair, but I suspect it will be a bath and jug of water....fun fun fun. Incidentally, I am not meant to use showers that run of water tanks at all post transplant so I'm not quite sure how that will work when I go on holiday...

I also had my lung function repeated today and it was 50% (1.43L), so almost exactly the same as last time. I must admit to feeling quite disappointed as I am desperate to see a big improvement and just dream of having near perfect lung function. The doctor said it will continue to improve over the coming months however, and that they are happy as long as it is stable at the moment. I just wish I could see into the future and beyond this immediate recovery period because at the moment I am still finding it hard to imagine myself doing 'normal things' like taking Seb out for a walk etc. I know its all small steps and it will come with time but its hard not to overanalyse things at this stage and there is a tendency to become fixated on numbers. I think the difference will be when I get back home into my own environment and start to discover all the new things I can now acheive.

In the meantime it's a case of trying to stay upbeat and positive and allow myself time to adjust and to recover. It's hard though, and at times I am finding myself quite emotional and teary for no good reason. It makes me feel guilty too, because I have been given this wonderful second chance through the gift of a complete stranger. A family is grieving for their loved one and I owe it to them, and to myself, to make the most of this new life. I know that I will do though, so I am therefore trying not to feel sorry for myself when clearly I have so much to be happy for. I'm sure the emotions will settle down as time passes and with each new day I am determined to make the most of this new life - the most precious gift I will ever be given.