← Return to Chronic GVHD ~ Let’s talk about it!

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@loribmt Thanks so much for the reply and the resources.
I went directly from acute skin GVH to GVH with mult. skin cancers before other manifestations developed. I initially was treated with steroids. I was on tacrolimus for at least a year-sorry to be less precise, it's been a long 4 years. I became aware of different issues long before they were officially diagnosed-more diagnoses is not a good thing, but validation is. What's been hard for me is with each new problem, I initially grieve the loss, accept, and try to re-frame what normal means. I try to conceptualize positive ways to live in that new normal...but then, another shoe drops-and losing the ability to visualize what a new future "normal" might be is hard. I try to accept it's just a big unknown.

I also keep acquiring more and more docs. and as the list grows, problems get subdivided as being under someone else's domain. It feels like there is less cross pollination of ideas. Maybe it's just me, but it sometimes feels like the fact that there is one person behind all the parts gets forgotten.``

It is what it is. I work at appreciating that I'm here!``Thanks for your replies and the hugs.

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Replies to "@loribmt Thanks so much for the reply and the resources. I went directly from acute skin..."

Good morning @esp117 Your fortitude in coping with this multifaceted C-gvhd is on a superhuman level. As someone who had my own experiences with gvhd I know you’re not wanting to hear positive accolades for strength. Because I’m sure there are days you don’t feel strong at all. I felt like a poser most days. But I can tell you, it takes a special person to be able to meet each new challenge head on with grace and dignity and then accept, adapt and move on. So please accept my empathy and support in how you’re re-framing each situation and looking for a positive paths forward.

I can also empathize with having several specialists working with you and trying not to feel lost in the medical maze. Are your doctors involved with the transplant team and specialists in graft vs host? Were you in a larger research/teaching hospital for your BMT?