... and one step back

It's been a little bit of a difficult day to get through, though there have been some nice moments. When I woke up this morning all the dressings that the nurse had put on yesterday showed signs that there was infection underneath. I lay around on my bed most of the morning as my wound was a little painful, then Carole and I went to pick up the extra dressings that had been prescribed by the nurse.

I showered and cleaned the wound as best as I could and redressed it, took some painkillers, put my feet up and carried on with some work I'd been doing. During the afternoon I got a call from the clinical-trial coordinator at Kings with some slightly annoying news. Last Tuesday's blood test had shown a low residual level of immunosuppressant. In fact so low that it was below the threshold allowed for me to be eligible for the trial. Fortunately the window for me to get eligible is open until next Tuesday so tomorrow they're retesting me and hoping that the level will be better.

In brief, the idea is that they take a blood test just before I take my next set of pills, to check the lowest level that the chemical reaches in my blood. If it is too low they increase my dose so that I'm never in danger of rejection. If it's too high they can reduce my dose.

The problem is that last week's blood test was at 6:15pm. I'd normally take the pills at about 9am (12 hours after the previous dose), but because of the test I'd put this off for another 9 hours. They claim to take this extra time into account, but I'm sure it led to the low levels, so tonight I'm leaving my evening dose until midnight, so that tomorrows blood test ( at midday) will be accurate, and almost certainly will make me eligible again.

Anyway, because of the retest I won't get on to the new drug tomorrow, and I'll have to wait until a new appointment next Tuesday. Despite that I still have to go in tomorrow for the ultrasound scan, two blood tests, and a normal clinic appointment. I'm leaving by taxi at 10am, and I probably won't get home until 6-7pm. Very long day, very boring. Fortunately the company running the clinical trial will pay for the taxis!

Nicer things today included a surprise visit by a colleague at work who, in fact, also used to be my maths teacher. He has also been off work with some really complicated medical nasties (his medical history makes mine sound like a walk in the park) so we swapped hospital stories, and he told me some news about what's been happening at school.

The other thing I've enjoyed today is that I've got really stuck in to some work that one of the assistant heads asked me to do. I've spent quite a few hours researching, modelling data, phoning outside agencies and producing analyses, and it's been great! Wonderful to feel useful and do something entirely medically-unrelated. My colleague wisely said that I should ignore anyone who tries to persuade me to 'just rest' and in fact he'd been persuading people to email me jobs to do, as he knows all too well how keeping mentally busy really helps.

Anyway, this evening I'm really feeling quite creaky and sore, and its all a little miserable as I'm not really looking forward to tomorrow at all. Still, they'll finally be able to do something about this infection, and then this one step back will soon turn in to several more steps forward, and all will be well again. Onward and eventually back upward!