I went to the clinic today, which is actually the highlight of my week. I know I'm doing well, but like to hear it from the doc every few days. My labs look good: platelets were 125; hemoglobin was 11.3; my MCV was (whatever that is) was a bit high at 102.4. There are three symptoms for HVGD (host vs. graft disease): I got some GI issues, because I poop too often, but there is no diaherra so it's considered manageable. I have a skin rash, but it is only rated 2 on a 4 point scale. My oncologist is giving me half the standard steroid dosage, since it's only on my head and shoulders and appears to be getting better. Finally, the liver is subject to damage, but my bloodwork is fine. It's actually a good thing to have some 'manageable' HVGD issues. Apparently, it reduces the chances of the leukemia coming back.
The past few days my hands started shaking. Doc said it was probably just the steroids and not to worry. I've had lots of little red dots form on wrist, hands and forearm, but Dr Patel said it was not HVGD. They will watch it, but it looks to be related to my blood shiner shots that I inject twice a day. My LD drops each week; it's now 219. Bottom line- I'm still doing very well.
I can get out and walk around if it's not sunny. A sunburn of any degree might set off a skin rejection issue, which could land me back in hospital. I can go through drive-thrus, but still must stay away from restaurants and Wal Mart. So, house arrest continues.
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