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