His initial GVHD was extremely dry mouth which made it difficult to eat without a lot of water to help "wash" it down. He also experienced dry eyes. He ended up having his upper and lower tear ducts cauterized. This was a considerable help, however, he still has intermittant dry eyes. This is relieved by over the counter eye drops. He has tightness in his hand tendons which makes it difficult to open things and gripping. These "problems" are so minor compared to having and dealing with MDS it is almost embarrassing to mention them. Yes, it is good to have some GVHD. We read what others have and are experiencing and we are so thankful for what little he has had to adjust to. He takes very few meds ~ Sirolimus for immunosuppression, penicillin, bactrim, acyclovir, and actigall prophylactically. He does phlebotomy on a monthly basis for elevated ferritin due to the numerous blood transfusions. He also takes numerous supplements. He worked through the 10 years of MDS prior to transplant which included many rounds of chemo. His transplant was easier than the prior chemo treatments and he worked from the hospital and during his "in house" time post transplant. Fortunately, he is in sales and could work from home. He retired the first of February and we are beginning a new journey. We thank God for this second chance. He bought a bike since retiring and is up to 12 miles a day. There can be a wonderful life waiting for you after transplant. Rejoice in the fact that your sister is perfect match. So many would love to have that gift. My husband did.
Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good