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Old Thu May 3, 2018, 05:59 PM
rar rar is offline
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Join Date: Mar 2014
Location: colorado
Posts: 215
My transplant was 3.75 years ago. At 3 months I came down with CDiff, aGVHD and spent 2 months in hospital. i can't tell you if the food is any good as I did not eat the entire time. The nurses told my wife I was not expected to live, I showed them. I lost 60 pounds. I was discharged and put on tacrolimus and prednisone and a lot of other drugs. 2 months at home and was allowed to eat again. I got better and at a year post transplant I was told I was engrafted and should stop all the medications. 3 days later I came down with bad cGVHD mouth, throat, eyes, and head to toe itchy painful rash. Back on drugs again I got somewhat better over the next year. I know the effects of GVHD are supposed to get better with time; my eyes got worse. It is the the point that I am so dizzy that I am not able to live a normal life. I have been to 7 eye doctors. 6 said I have dry eye and tried to treat the symptoms. The last one said I have very severe GVHD of the eyes which is causing confusion in my mind that causes the dizziness and I should be seeking a systemic cure for the GVHD. I saw a neurologist who had to look up GVHD. She said my bad hearing and eye problem interferes with my ability to orient myself in space and causes the dizziness, not GVH. She thinks my problem is either in a neck or head problem. She recommended physical therapy, a MRI of head and neck, and blood test for autoimmune diseases. The two opinions seem similar.

I am getting the recommend dry eye glasses. They form a chamber around the eye to keep the humidity up. I passed on the giant contact lens that needs a week of training in Boston to use properly and awaiting test results. I have also started imbruvica (ibrutinib). It is supposed to give at least some relief to 2/3 of users. It takes between 4 and 40 weeks to see results. I will keep my fingers crossed. So far no results or side effects except for a rise in WBC and ANC which is to be expected. It is expensive, certainly worth a try if you can find someone to pay for it. I am not sure what else to try and welcome any suggestions.

Ray
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