Thread: Post Transplant
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Old Tue May 15, 2012, 10:32 PM
donna j. donna j. is offline
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Join Date: Sep 2011
Location: long island, new york
Posts: 110
hI jimc,
Sorry for not responding sooner, have been away from the forum for awhile. I have been getting 2 units of red blood cells more frequent than every 2 weeks. It seems the Valcyte which I have been taking to bring the CMV under control is messing with my blood counts. The CMV #s have been "scant" for the last several weeks and the Valcyte has been reduced to 450 mg every other day. My prednisone was reduced to 2.5mg every other day, but I began to have digestive problems and lack of appetitite and wt. loss, so the prednisone was brought back to 5 mg every other day. The dr. informed me today that she cannot reduce my cyclosporine (1.3 mg 2x a day) until she can get me off the prednisone with no GVHD, and my body is producing its own version of Prednisone. Following a cat scan last week, I learned today that my spleen is enlarged and my liver irregular. Last week, there was concern as my creatine levels were high, but they have since gone down to what the dr. calls acceptable levels 1.57 ( still above normal).
Much of this she feels is because of problems maintaining satisfactory blood count numbers and the need for transfusions. I was given a shot of Neulasta 2 weeks ago and my white cells are up to 5 this week. Following a transfusion on 5/2/12 My hemo was 8.9 yesterday and my platlets were up to 31 from 22 the week before. So I am cautiously optomistic, that they may be rising. My blood continues to test 100% donor, but I have not yet had my dreaded post transplant BMB. It has been discussed but not scheduled.
Of course I am worrying now about permanent damage to my organs while receiving these transfusions and having to continue to take all the medications I take.
The dr. believes once we can start to wean me off the meds, I will begin to have some energy.

That is where I am at.

Regards,
Donna
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f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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