Month 17, Part C

Today marks 17 months since the transplant. I went in for my clinic visit on Monday and there still isn’t a lot to report. In fact, it seems the doctor who saw me last time failed to put a CBC (complete blood count) on my prescription for blood labs, so I don’t even have the blood counts. However, they have been pretty stable for a while, so we’re not too concerned about not having them. My pulse ox (or O2 sat as they say on ER) seems to have dropped even lower (down to about 89), although the machine didn’t seem to be working well. But since I’m not unusually short of breath (usually), the doctor and PA don’t seem too concerned

After my previous clinic visit, the plan was to reduce my Prednisone dosage from 15 mg/day to 10. However, about a week and a half later, my muscles started aching a bit again and I suddenly put on a few pounds. I figured that the GvHD was kicking in again, so I called my PA and she suggested going back up to 20 mg/day. As best as I could tell, it didn’t make the GvHD go away, but it did stop it from getting worse. On Monday, my doctor suggested cutting back to 17.5 mg/day for a week and then to 15 if I wasn’t feeling any worse. I’ll see how I feel on Monday, but right now, I think the GvHD may be a little worse – but maybe not, it’s hard to tell.

I’m really making this up, but I feel like if my new immune system is going to recognize its new host as not foreign some day, it needs to be stressed a bit that way. In other words, if we over suppress the immune system, it will continue to fight its new host when it gets the chance. Even though this idea may only be fantasy, I’m willing to put up with some GvHD in case there is some basis to the theory. I don’t know what a good level is, but I’ll just play it by ear. My goal continues to be getting off meds, especially the steroid. I go back again on 1/30.

Love,
Justin

Month 17, part B

Happy New Year. As you can see below, my blood counts are staying in a fairly narrow range (and a pretty good range).

...... last week current normal
..... ---------- ------- ---------
WBC.. 6.6 ...... 6.6 ..... 4 – 11
Hgb.. 11.7 ..... 11.6 ... 14 – 18
Plt.. 223 ...... 247 ... 150 – 400

My pulse ox was back down to 91%, but they still don’t seem concerned. My physicians assistant says my liver enzymes indicate that I am handling the reduction in Prednisone very well. She thought I could probably reduce the level again, but my regular doctor was not available and the doctor I saw seemed to know nothing about my condition until he read my charts when he came in the exam room. I felt like he didn’t have a good picture and recommended that we keep the Prednisone at 15 mg/day until my next appointment which he said could be two weeks. My PA questioned him a little, but he said I was just reduced to 15 last week and he didn’t want to reduce it too rapidly. When he left, I told my PA that I didn’t know what the protocol was, but if she spoke to my regular doctor and she thought I could reduce the Prednisone, she could just give me a call. She did call a day later and said it was fine to reduce it to 10 mg/day and we agreed that I would do so after a week.

Starting in January, my doctor is going to start seeing patients on Monday instead of Thursday, so my next appointment is not until 1/16/06.

Cramping is still pretty bad at times, but it’s not constant.

Overall, I’m still feeling pretty good and hope we can continue to reduce the immune suppressants. My weight has been holding steady, which to me indicates that I’m not starting to retain fluids again, although when they examine me, the doctors believe I am still retaining some fluid – just not nearly as much as I had been a month or so ago.

Love,
Justin