Nothing I do is simple. I can’t just have either acute or chronic GvHD. Instead, I have a hybrid syndrome with symptoms of both acute and chronic GvHD. My labs from yesterday show that the Tacrolimus I have been taking over the past week has lowered my elevated liver enzyme levels. They’re not back to normal yet but they are headed in that direction. My itchy skin rashes have, for the most part, gone away with the topical steroid cream Mary Pat has been smearing on my chest, back, and legs. Both the elevated liver enzymes and the skin rashes are signs of late onset acute GvHD. My fingernails continue to be brittle, to have pronounced ridges, and to split down the middle to the quick. That is apparently a sign of chronic GvHD which might be a permanent problem. Dr. C was happy to see that my liver enzymes are responding to the Tacrolimus and has doubled my dosage to nip the GvHD in the bud. I’m happy he’s done that. I just worry about being even more neutropenic when the next round of Azacitidine starts next week.
Well, I suppose we couldn’t really expect that your victory over this disease would be without complication. Altho. I’d been kind of believing that if someone could do it it would be you. I am disappointed for you but remain confident that this speed bump will too be a thing of the past. I can tell you your posts are really inspiring. I am sure things are up and down and there are many stresses but your love for each other really shines through as a very bright light guiding this journey. Kind of gives me goosebumps it’s so palpable–Any idea when you can see people?
Please excuse typos and brevity. Sent from my iPhone.
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Well…as you said…you have to be different…which is not a bad thing….has there been many cases of hybrid cases of this new issue….as I said before….you started in a very healthy state..except of course for your marrow….I really do believe it is just another bump in this journey….my heart is smiling knowing your liver profile improved so quickly….that is very good….thank you for the update….I do know it hs been a long road….but you have beaten many odds and I feel you will continue to…your brother has some really strong cells there….I will pray they become “friends” with yours soon…hang in there…..as always ..BIG HUGS to you and Mary Pat….I wish you a blessed and comfortable Thanksgiving….you are such a good patient and teacher…thank you! 👍👍👍👼👼👼🙏🙏🙏😉😉😉🙈🙈🙈
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