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

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Lori, Volunteer Mentor (@loribmt)

Chronic GVHD ~ Let’s talk about it!

Transplants | Last Active: Dec 2, 2021 | Replies (66)

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@loribmt

@pamh480 Hi Pam, Thought I’d check in with you to see how your surgery for a cholesteatoma went earlier this month. Has this impacted your hearing at all? Hopefully all is well now and you’re recovering nicely.

I was also wondering if your gvh flare settled down a bit? Oddly, I had a return of some symptoms too, about 2 weeks after my 1st vaccine appt. But it has disappeared and I was able to get the 2nd dose. Finger’s crossed there’s no repeat. At least I know now that it’s temporary and caused by inflammation. Beats getting the virus. After speaking with my neurologist, any risk from the vaccine definitely outweighs getting the virus.

Re-reading your previous message about your back pain and fatigue. Have you worked with a physical therapist? I found during all my treatment and recovery that my core muscles suffered greatly. I thought I’d been trying to exercise and been active enough to keep ‘in shape. Wrong! LOL
But after checking in with my oncologist, he set me up with a PT. Wow, learning some simple core exercises really made a huge difference in my stamina, back fatigue, standing and balance. Just a thought.

Since we chatted last, Connect has gone through some Spring remodeling and decorating, Have you had a chance to check out the new and improved site? It’s more streamlined and you can now control the amount of emails received, personalize notifications and search easier.

Sending positive wishes your way! Be kind to yourself and remember to listen to your body. Lori.

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Replies to "@pamh480 Hi Pam, Thought I’d check in with you to see how your surgery for a..."

Hi Lori—surgery went well with the exception of someone didn’t believe me when I said paper tape only. I got a pretty bad hematoma on my neck even tho I told everyone my skin was too fragile for regular tape. Oh well. The exercise thing is a good idea. I’ll ask. I got my second shot and had more of a reaction with a few days I’d fever and fluish response. Glad you were able to get yours. So far no flare tho. 🤞 take care

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