Month 25

Well, since last reporting here, it’s been a bit of a roller coaster ride. Actually, it’s more like my health situation seemed to get better and worse simultaneously. Things seemed to be going fine; I stopped the Prednisone on about August 7 (so that Acyclovir, the anti-viral drug was the only med I was left taking) and was feeling good until August 21. That day, I woke up with a fever that made me feel pretty lousy. I didn’t have a lot of other symptoms, but that fever continued for 13 days straight, ranging from about 99.4 to about 100.8. Now, that’s not a high fever, but 13 days seems way too long for it to persist. I guess the good news is that my immune system kept the infection (most likely viral) from getting out of hand. The bad news is that my immune system doesn’t seem that good at actually eliminating the intruder. I’ve been a week and a half now without a fever and feel OK and glad that I don’t still have that achiness, but I am still sort of run down and tired a lot.

The other good news is that my overall recovery seems to be continuing quite well. I had my 2 year bone marrow biopsy/aspiration on August 30 and got the results on Monday. As I expected, the chimerism studies of both my bone marrow and peripheral blood still show 100% donated marrow. Not only that, but my blood counts continue to improve as follows:

..... previous current normal
..... -------- ------- ---------
WBC.. 6.0 .... 7.8 ..... 4 – 11
Hgb.. 13.6 ... 14.7 ... 14 – 18
Plt.. 274 .... 337 ... 150 – 400

My hemoglobin made it into the normal range for the first time since the transplant. They had warned me that it might never recover completely, but it looks like it has. So I may still feel tired from being sick for so long, but I now have more hope that my stamina can return full strength. I got a taste of that before I was sick and it felt really good.

More good news is that I’m now (since Monday) off all meds! I was just taking the anti-viral drug Acyclovir for the last several weeks, but since I seemed to get sick from a virus anyway, I’m not sure how much good it was doing. Now I have to get a Dexascan to make sure my bones have survived intact, plus I have to get a whole series of vaccinations - just like a kid would, I imagine:

• polio – (inactivated, non-oral) – 3 doses
• tetanus and diphtheria (but not pertussis) – 3 doses
• hepatitis B – 3 doses
• influenza
• pneumococcal – 2 doses
• hemophilus influenzae – 3 doses
• mumps, measles, rubella

I’m doing well enough that they are stretching out my time between clinic visits to 6 weeks instead of 4; plus I’m going back to the dentist and my PCP which I haven’t done for 2 years (with one exception for the dentist to fix a filling). Now I’m scheduled for fun things like a colonoscopy, for which I am overdue at 54 years of age.

Overall, I’m very happy that my recover continues and I seem to be doing as well as I am. There are always things to complain about like my taste still far from recovered and I still have muscle cramping in various parts, but these are relatively minor things compared to what could go wrong. I still see other BMT survivors who are still suffering every day at 4+ years post transplant.

I imagine the gaps in my blog will grow larger as I have fewer incidents and fewer doctor visits to report, but I do intend to keep making entries when appropriate.

Love,
Justin