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kathryninstereo
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I am seven/eight years post-transplants and wasn't blogging then, but have kept one since I was told I needed a second liver transplant in 2013 - GvHD totally trashed my own, had a liver transplant, stem cells migrated to my bone marrow, had an accidental third stem cell transplant, lung GvHD has now compromised my lungs…
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Have you had a CT of your lungs done? Chronic GvHD can sometimes only become apparent once it's happened. I don't want to worry you unduly but it might be worth asking for to put your mind at rest.
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Your ulcers could well be GvHD, if they are lasting longer than a couple pf days, they are not your standard ulcers. Flixonase nasules as a mouthwash done four times a day can be helpful, alongside a spray of the same name to target individual areas. There is also a stronger spray called Budasonide which is stronger. If…
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Is there such a thing as 'normal'? For me now, normal is using a wheelchair due to lung GvHD, still having photopheresis and multiple clinics. This is over 5 years post-transplant. I still have as much of a life as can be - I have friends, I go out, I do what I can within my limits. Heather, I sympathise with managing…