New & feeling lost online: Seeking heart transplant support group

Posted by bellini @bellini, Jun 2, 2021

Hello, could anyone advise on how I join the online group meeting? Thanks

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Hi, @jackiez

I'm so happy to hear from you. Thank you so much for writing! I hate the term, too. Super depressing - and so final. And it would be nice if along with a diagnosis, they handed out info, so you don't just go home upset and scared. But I'm sure it could be worse.
How incredible you are! Both heart and lungs is miraculous.
I'm so happy to hear from you and the other generous group members. However, Jennifer K. emailed me yesterday and seemed to want to point me in another direction. I sent her more info., but as she's really busy, she hasn't found time to get back to me. So I think I'm outside the group for now, maybe forever. But thanks for saying about a private message. I'll figure it out. I've got a small cataract surgery tomorrow, so I'm probably out of touch for a bit. But I'll be in touch after, if that's all right. Thank you very much again!

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@colleenyoung Colleen, thank you! It's good to hear that. And good that I can correspond with @estrada53 and @rosemarya as well. I'll request reg. in the Heart and Blood Health group. Thanks very much for the redirect.

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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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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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