My health has still not settled down and changes are underway. I am still feeling pretty good though experienced some nausea, stomach cramps and diarrhea in the past week. I will probably be experiencing more as I back off some of the medications.
My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.
Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.
My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.
2 comments:
I'm doing my best praying and wishing for you. I miss talking with you in person. Say hello to your patient wife as well!
Joyce
Sorry to hear of the setbacks.
Hope the adjustments in medications help. I am available if you need that infusion from me.
We keep praying for God's help.
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