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Chronic GVHD ~ Let’s talk about it!

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 15, 2022 | Replies (68)
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@pamh480

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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Replies to "Hi Lori—surgery went well with the exception of someone didn’t believe me when I said paper..."
Lori, Volunteer Mentor | @loribmt | Apr 19, 2021

Hi Pam, I’m happy to hear your surgery went well! That has to be a relief, except for the reaction to the tape! Hopefully that area is healing nicely and leaves no trace! Paper tape is a must for me now too. Never thought of myself as ‘thin skinned’... LOL

So far the second shot has yielded no surprises for me. Yay! First time around with the flare up was enough. I did have an antibody test run on my blood a couple of days before my 2nd shot.
The results showed, one month after the first vaccination, that I did indeed have a strong immune response to the vaccine. I was elated considering I’m still on Tacrolimus.
I’m happy you were able to get yours. Feeling flu-like for a couple of days is far better than us getting the virus!

Recalling an earlier post, you live in Mesa, AZ. Do you take any extra precaution from sun exposure for your eyes and skin?
Chatting with my transplant doctor at my last appt he wanted to know what I wear when out in the sun by way of coverup clothing. I told him I’m judicious with wearing strong, broad spectrum sunscreen. He said that sadly, that’s not enough. High collars, long sleeves, hat and sunglasses because we transplant patients have a higher chance for skin cancer. Sigh...

Enjoy the warmer weather. Today we were treated to a snow covering again after such a warm, pleasant weekend, Oh well...spring in Wisconsin. LOL.

All the best! Lori

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