Day 251 (formerly posted as day 244)
Not much in the way of new or unexpected news at today’s clinic appointment. My blood counts improved a bit and the doctor said I look good and am doing well. I told him I still have some GI stuff going on, so as I figured, he didn’t adjust my meds at all. He said that prednisone would probably take care of all my symptoms, so if I was terribly uncomfortable, he would start me on that. However, the cramping is not bad enough for me to want to start in on steroids. He also said it is tempting to want to eliminate the one pill of Prograf (an anti-rejection drug) that I’ve been on for some time, but experience tells him it’s best just to wait it out.
WBC – 3.5, up from 3.3 and seemingly good enough even if below normal
Hgb – 11.6, up from 10.9 and still below normal of 13
Plt – 281, up from 272 and at a good level
AST-SGOT – 37, down from 47 (below 42 is normal)
ALT-SGPT – 45, down from 52 ( below 40 is normal)
So all the counts improved a little. If both my liver enzymes (the last 2 listed) were below 40, and my intestinal cramps subsided, I think they would start weaning me off the immune suppressants.
When I was in the waiting room, I struck up a conversation with another BMT patient who said he is about 20 months post transplant and is still on a lot of meds including Cellcept, which is the other (besides Prograf) anti-rejection drug that I am on. His brother was his donor, and he said he had pretty severe intestinal GvHD starting at about 3 months post transplant. I was sorry to hear (for him and me) that he is still on immune suppressants after 20 months. That doesn’t mean I will be, but it reminds me I could be.
After he left, another BMT survivor whom I know a lot better (he is in our BMT couples group) showed up. He is almost 4 years post transplant and has just gotten some new GvHD attacking his lungs. He says he can’t even walk up a flight of stairs. I didn’t get to talk to him long, but he seemed pretty discouraged.
Both of these conversations were reminders how different everyone’s post transplant experience is, and that GvHD really can persist and flare up for a long time.
My hair is longer than it’s been in at least 30 years, and it’s still quite curly. In fact, that’s why it’s long – I’ve never had curly hair before, and I’m just having some fun seeing what happens if I let it grow out.
Love,
Justin
WBC – 3.5, up from 3.3 and seemingly good enough even if below normal
Hgb – 11.6, up from 10.9 and still below normal of 13
Plt – 281, up from 272 and at a good level
AST-SGOT – 37, down from 47 (below 42 is normal)
ALT-SGPT – 45, down from 52 ( below 40 is normal)
So all the counts improved a little. If both my liver enzymes (the last 2 listed) were below 40, and my intestinal cramps subsided, I think they would start weaning me off the immune suppressants.
When I was in the waiting room, I struck up a conversation with another BMT patient who said he is about 20 months post transplant and is still on a lot of meds including Cellcept, which is the other (besides Prograf) anti-rejection drug that I am on. His brother was his donor, and he said he had pretty severe intestinal GvHD starting at about 3 months post transplant. I was sorry to hear (for him and me) that he is still on immune suppressants after 20 months. That doesn’t mean I will be, but it reminds me I could be.
After he left, another BMT survivor whom I know a lot better (he is in our BMT couples group) showed up. He is almost 4 years post transplant and has just gotten some new GvHD attacking his lungs. He says he can’t even walk up a flight of stairs. I didn’t get to talk to him long, but he seemed pretty discouraged.
Both of these conversations were reminders how different everyone’s post transplant experience is, and that GvHD really can persist and flare up for a long time.
My hair is longer than it’s been in at least 30 years, and it’s still quite curly. In fact, that’s why it’s long – I’ve never had curly hair before, and I’m just having some fun seeing what happens if I let it grow out.
Love,
Justin
1 Comments:
Hi Justin,
Just thinking of you today and catching up on some of your blogs. Glad to read that you have been getting some exercise. Keep the curls!
Love, Kirsti
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