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New & feeling lost online: Seeking heart transplant support group

Transplants | Last Active: Jan 31, 2023 | Replies (23)
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@1075

Thank you so much @estrada53 @colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly went grocery shopping Sat., and was a mess for Sunday as well. Tried 4x and it was all over the place. So I've learned my lesson and will keep it brief. Thank you so much everybody, and if Jennifer K. places me in the group, I'll be there. And if not, it was wonderful, even if brief. You all are the most welcoming, and the most supportive, and kindest people I've ever met. Thank you so very, very much. You gave me shelter from the storm.

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Replies to "Thank you so much @estrada53 @colleenyoung, @danab, @rosemarya ! I tried to write yesterday but foolishly..."
Colleen Young, Connect Director | @colleenyoung | Jan 16, 2023

You're always welcome to continue to connect with fellow heart patients here on Mayo Clinic Connect of course 🙂

You may wish to check out the Heart & Blood Health support group here: https://connect.mayoclinic.org/group/heart-blood-vessel-conditions/

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jackiez | @jackiez | Jan 16, 2023

@1075 I am a heart lung transplant recipient. I too was in heart failure. By the way, I hate that term….so much that when I was hospitalized at Mayo and was on the Heart Failure Service I told one of my docs that they really needed to reevaluate that term. It’s so depressing. I suggested Heart Optimization. Anyway…I digress.
I lived with restrictive cardiomyopathy for about 24 years. I had a pacemaker and then an ICD. We all have a story. And we’re here to share and answer questions if we can. Good luck and you can always reach out to me via private message too.

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Dana, Volunteer Mentor | @danab | Jan 31, 2023

Hi Jen, Just checking in to see if you had seen my post from earlier, and I agree the term is not very descriptive of the condition. It really only means a reduced blood flow each time you heart beats. So failure is completely inaccurate. Many people live very long lives with a reduced injection Factor which is how they measure it. I actually had to get the transplant because of arrhythmias not from the the heart failure diagnosis. So please don't get worried over the word and please stay in the group , many of us have been there.
Dana

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