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!
5 months ago