Weekly online support group for BMT

Posted by kseanob @kseanob, Jan 15 11:25am

I seem to recall seeing a listing for a weekly online support group for patients who have had a Bone Marrow Transplant. I'm helping my friend get through her 100 days post discharge, but I can't seem to find the listing. Suggestions, anyone?

Interested in more discussions like this? Go to the Transplants Support Group.

Hi @kseanob Here is the link for the online BMT support group though it meets only monthly.
https://connect.mayoclinic.org/event/bone-marrow-transplant-bmt-support-group-4/
But you’ve come to the right place because we have continual support for bone marrow transplant patients right here! ☺️. She or you can write anytime and a number of us who have had transplants will be happy to answer any questions or offer encouragement. I’m assuming your friend had an allogenic transplant, cells from a donor. That first 100 days is crucial for recovery. Once she clears that it’s a little easier going but still some ‘growing pains’.

I’m at the 3 year 7 month mark of my allo transplant and feel fabulous! It’s difficult to even imagine feeling this well during those early days of transplant. Nothing anyone could have told me could have convinced me that I’d be 100% my old self again. So I want to encourage your friend to keep her spirits up! This gets better!
Here’s a little story Mayo published about one of the younger transplant members I had an opportunity to meet and work with personally. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

~~~
You’re friend is very lucky to have such a great friend to help her over the rough patches. Is there anything in particular she’d like to know? Any concerns?

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@kseanob If your friend would like to join Connect and meet up with some other transplant patients, I’d love to invite her to this discussion. I stated it a few years ago and we have several members who will openly discuss their experiences. I’d like to introduce you to @alive, @waveg @edb1123 @lisal64 @pamh480 @secglc2 and others in the group!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope you’ll encourage your friend to join the discussion! How many days post transplant is your friend?

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I totally agree with Lori that the first 100 days are very crucial and scary. The body is experiencing so much as the new immune system is going haywire. My kidneys were failing, I had a severe gut GVHD and kept going to the hospital with random fevers.

The body is very fragile during that time. Fatigue and muscle deterioration made me bedridden. It was a balancing act trying to start regaining muscle tone and not wanting or being able to do anything besides resting.

I’m 6.5 years post transplant. I have chronic skin GVHD, but my meds control it. I have a very full and productive life for a 57 years old. Things get better as time goes by.

Have your friend connect with us here. We each had a unique transplant experience, but still had a lot in common as far as our post-transplant side effects were.

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@loribmt

@kseanob If your friend would like to join Connect and meet up with some other transplant patients, I’d love to invite her to this discussion. I stated it a few years ago and we have several members who will openly discuss their experiences. I’d like to introduce you to @alive, @waveg @edb1123 @lisal64 @pamh480 @secglc2 and others in the group!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope you’ll encourage your friend to join the discussion! How many days post transplant is your friend?

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I would be happy to share my experiences with your friend. I had my BMT in 2020 and am doing great, but I did have a few “bumps in the road” along the way. Now I play golf and pickleball and work out regularly. 😁

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@alive

I totally agree with Lori that the first 100 days are very crucial and scary. The body is experiencing so much as the new immune system is going haywire. My kidneys were failing, I had a severe gut GVHD and kept going to the hospital with random fevers.

The body is very fragile during that time. Fatigue and muscle deterioration made me bedridden. It was a balancing act trying to start regaining muscle tone and not wanting or being able to do anything besides resting.

I’m 6.5 years post transplant. I have chronic skin GVHD, but my meds control it. I have a very full and productive life for a 57 years old. Things get better as time goes by.

Have your friend connect with us here. We each had a unique transplant experience, but still had a lot in common as far as our post-transplant side effects were.

Jump to this post

Thank you one and all for your words of perspective. I'll encourage her to join. It sounds like just the ticket.

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