And counting! 22 more days to day +200! Another major milestone. Well, it’s not all be smooth sailing over the last few weeks. I had to go into the hospital 3 times in the last week. First on Monday for my regular clinic sessions, then again on Thursday (more about that later) and then again on Friday (ditto)!
When I went in for my regular clinic last Monday, my blood counts were very low. My neutrophils were at 0.1, which was alarmingly low. Knowing that it wouldn’t have fallen to that level overnight, and knowing the stuff that I was up to prior to the clinic, it’s probably a wonder I hadn’t gotten an infection! So the doctors were obviously concerned, and asked me to come back again on Thursday for another test. Plus they gave me a couple of GCSF jabs to help boost my blood counts.
What scared me most was that one of the doctors actually told me that they’re worried about a relapse and have booked a bone marrow biopsy for Thursday. But he also said that it was very unlikely that it was a relapse, as my other blood results have been very positive. It was simply a precaution.
So on Thursday I dutifully reported into the outpatients department again, got stabbed yet again, but my blood counts were still low. There was some good news though, the CMV levels in my blood were negative and I could stop taking the valganciclovir and the septrin, both of which could cause my blood counts to drop. They also reduced my ciclosporin dose, which would help my immune system fight off this darn cold I’ve had for the last 7 or so weeks.
The downside to all the reduction in antivirals is that I need to take an infusion of Pentamidine every month. The good news it that it’s done on the same day as the clinic, so I only have to come in once a week but I’d have to stay longer.
The biggest bummer is that I still have to come into clinic once a week. I was hoping that I would be seen less often at this stage, but as they’ve just removed my anti-virals completely, it would be ‘wrong not to monitor’ me, according to the consultant. It’s a drag coming to clinic once a week, and it just takes up so much time. Hopefully I can move on to less frequent visits soon.
But for now, looking forward to day +200.