Post-heart transplant care Florida

Posted by nanmargaret @nanmargaret, Sep 23 11:26am

I had a heart transplant 4 years ago and have chronic AMR, antibody-mediated rejection, so I'm having ongoing surveillance and treatment. The institution that is treating me has recently undergone major changes and restructuring.
I'm wanting to seek a second opinion and wonder if anyone here has experience with Mayo Heart transplant program in Jacksonville? If so, I'd appreciate your input either here or by private message.
Thank you.

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Hi @nanmargaret,
My experience has been at Mayo Phoenix and I can't say enough about the thoughtful care they've given me. I can't imagine Jacksonville being different.
If I were you, I would definitely get in there and have the docs evaluate you. I live in Tucson and when I started experiencing heart failure symptoms, on a whim I opted to go to Mayo for a second opinion. I am so glad I did.
Nearly 6 years out now.
Good luck and stay in touch.
Ellen Estrada

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I received my heart transplant at Mayo in Phoenix on June 30, 2022. I cannot say enough about the care I have received and the availability of providers and others to answer any questions I have. I have a transplant coordinator that I have access to and who takes care of scheduling all of my follow up appointments, seeks answers to questions I have, etc. I cannot say enough about Mayo.

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@nanmargaret, allow me to tag fellow heart transplant patients and caregivers like @eileenheart @jbilton @jstoll1247 @bsox1901 @susanweir, who have experience with the care at Mayo Clinic in Florida. They can share their experiences. Do you have specific questions you'd like to ask?

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My experience at Mayo Clinic Jacksonville,Fl. has been excellent. I am approaching 14 years December 11. The entire heart transplant program is first class.

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@eileenheart

My experience at Mayo Clinic Jacksonville,Fl. has been excellent. I am approaching 14 years December 11. The entire heart transplant program is first class.

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So good to hear from you again, Eileen, and thank you for responding to my having tagged you. I'm sure @nanmargaret will also appreciate reading your post.

14 years with your new heart. That is certainly something to celebrate!

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Hi @estrada53, @colleenyoung, @eileenheart, @jcwilliams
Thank you for all of your input, it's been very helpful. I'm happy to hear your experiences and will be seeking a second opinion.
If anyone has more specific recommendations about who to contact, please let me know by private message.
Thanks again!

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