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After a couple calls from the grim reaper I am still upright. They say the cutoff between acute and chronic GVHD is 100 days. I got symptoms at 100 days so I have chronic acute GVHD. I am still on 26 drugs and supplements. This makes it difficult to sort out drug side effects from GVHD. I have eye problems. The punctum (ducts that run between eyelid to nose) don't seem to be working so I cry from my nose all day and have severe dry eye. I had the lower punctum plugged which helped a little. For the upper ones it requires a permanent surgery. I am not enthusiastic. I developed hypotension with systolic pressure as low as 45 which caused near fainting and extreme fatigue. Meds increased pressure to a low around 80. feeling much better but still dizzy. Sore throat, skin cancers cut out, osteoporosis. The fosamax did not agree with me. The doc wants to try prolia. I am not enthusiastic. I walk 3 miles 5 days a week and do strength training twice a week. My 50 pound weight loss in 2 month hospital stay greatly decreased my muscle mass. Except for the dizziness I feel pretty good. My doctors think I am a rare success story in their practice. I am not sick enough to try any of the GVHD treatments. I am on monthly visits for the duration. It could be much worse.
Bad experience with VA. When first diagnosed with MDS RAEBII the VA oncologist said I had MDS, it would kill me with out a transplant, their waiting list was so long for transplant that I would be dead before my number came up. I showed them. I applied for disability due to benzene exposure in service 55 years ago. I was denied my claim because my service record did not show that I went on sick call for treatment of MDS. MDS was not invented then. I was told my claim would take 3 to 5 years for the next stage. I said I would not live that long. I was told not to worry if I died my wife could continue my claim.
Ray
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