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

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Profile picture for Lori, Volunteer Mentor @loribmt

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?

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Replies to "Good morning @esp117 Your fortitude in coping with this multifaceted C-gvhd is on a superhuman level...."

@loribmt I'm sorry for the delay writing back, but thank you for your reply and for the hugs and reactions. The empathy and support are priceless. I find it particuly tough fighting invisible battles because I haven't had one person/or a group of persons to bear witness to the past 7 years. That makes all of your acknowledgements/validations so very powerful.

I am at a large, highly ranked Cancer research/teaching hospital- but many of my subspecialists are through partner institutions and don't seen to have special knowledge re GVH. Often docs are stretched too thin without adequate support..but that's just the state of health care. I'm trying to learn how to live on what feels like the fringe of medicine...

Thanks for providing a safe place to vent, with people who understand.