11-3-2002

WBC : 11.3
Neut : 0.82
Hb : 10.8
Plts : 120

Day 38:   11th March
Today we drove in (to be more precise, I drove there and Dad drove back) to Hammersmith for the second outpatient appointment. Unfortunately we arrived at a time when there weren't enough nurses on duty to take the bloods, therefore we had to wait two hours before being seen. This time I didn't take my cyclosporine before the appointment so the cyclosporineg levels in the blood could be tested. It probably didn't help too much that I managed to overdose on Saturday night on the cyclosporine. For the last three weeks, I've been used to taking three tablets of 50mg for each dose, however on Saturday night I open what I later found to be a pack of 100mg tablets. Therefore I took 3 x 100mg = 300mg instead of the usual 150mg. That is not too serious so long as you don't continue to overdose otherwise that could have serious consequences for the immune system, but I did feel quite rough that night. Cyclosporine does affect the stomach making it feel tender, and it certainly made my stomach more tender on Saturday night. I called the hospital the next morning just to let them know what happened, and didn't take my Sunday morning dose, so by Sunday night I was back where I should have been with regards my overall intake.

The consultation was pretty routine. The doctor asked me if I'd been feeling sick, or had any temperatures since the last appointment. In fact I've been feeling quite good since the last appointment. It's mainly the fatigue that I've noticed affecting me, and I'm always having at least one hour's worth of sleep every afternoon. After the appointments I usually find myself dosing off for two to three hours, as these appointments do take a lot of energy just waiting around as well as the drive into and from London.

My bloods have levelled off a bit, with the white blood count remaining at 1.3, although the neutrophils rose from 0.71 to .82. The platelets are now at 120 which is the lower end of a normal person. All these are good signs, and the doctor said that he'd be more impressed if the white cell count continued to rise slowly like it seems to be doing now rather than showing spiked increases which are often indicative of a less stable blood. He said that the team in general haddn't anticipated such an early and what appears to be stable graft, as the donor was an unrelated mismatch, but as progress was good, he told me to stop taking the aciclovir and fluconazole, anti-baterical and anti-fungal drugs. That means I only need to take my drugs now twice a day instead of four times a day. I'm to continue coming in tiwce a week for the appointments for the next couple of weeks, after which time the doctors will decide whether to see me only once a week. Just before leaving we asked for a medical card detailing that in case of an accident I should only be given irradiated blood products due to my bone marrow transplant. This needs to be carried at all times just like a donor card. They also gave me a similar card explaining that I don't have a proper functioning spleen, so again, in the case of an accident the medics would be able to give me the appropriate drugs. Seeing as I'm hardly ever out of the house, I don't expect to need to use the card, but it's something I'll always have to carry with me forever.

Although my hands have long since stopped being affected by the graft vs. host, my skin started peeling on my fingers and thumbs on the underside of the hand. I don't know how much of this was due to the harderened skin from kitesurfing and how much was due to the GVHD, but over the last week I've been picking the skin off the hands quite a bit. This isn't painful and hasn't affected the use of my hands, just there's been a thin layer of skin peeling. Now there's no more peeling but the hands look a little untidy until the rest of the skin grows back until it looks like normal.

I have noticed, though, that the skin on my legs has been quite sensitive, which is apparently normal following the radio therapy, so it's just a matter of being more careful with using a towel and trying to rub the skin too hard. The only other difference has been with the eyes, and the moistening of the eyes. When I close the eyes to go to sleep they get a little irritated until they're used to being shut after which it's not a problem. The same is true when getting up in the morning, when often the eyes feel a little sore from keeping them open too long without blinking. I'll bring this up on my next appointment as it wasn't something I'd really noticed until this evening.