Mended Hearts Open Forum

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  • 1.  Pre-Transplant Support Group

    Posted 10-19-2022 08:14
    Greetings, all! I am at the very earliest stages of vetting for a heart transplant. I'm a 70yo woman with CHF and a pacemaker, otherwise pretty healthy. I've never had a heart attack, per se, but I did have an extreme ventricular arrhythmia earlier this. TG for my pacemaker, which shocked me three times and saved my life! I'd like to find a support group, preferably live online, where I can ask all my (crazy) questions. Is there such a thing? At best, I have found places to ask a question, but no open discussion groups. I would attend in-person meetings in NYC but prefer online. TIA and best wishes for good health to all!

    Deane Gross
    New York

  • 2.  RE: Pre-Transplant Support Group

    Posted 11-29-2022 12:57

    Hi Deane,
    Have you checked with your cardiology team regarding support groups connected with your transplant hospital? I received a heart transplant at the University of MN Medical Center and participate in a support group that's facilitated by the transplant social workers. It's intended for transplant and pre-transplant patients.

    If you're interested, I'd be happy to chat with you to try to answer some of your "crazy" questions. Hope you're doing well.

    Cheryl Lachelt
    Burnsville MN

  • 3.  RE: Pre-Transplant Support Group

    Posted 11-30-2022 00:46
    Thanks, Cheryl. After my last procedure, my doctor said he'd find a group for me. Apparently, my hospital-- which is huge!--doesn't have support groups. I'd actually prefer one at a different hospital because I'm not sure I trust the confidentiality of these groups and don't want any questions about hesitation to get back to the vetting committee at my hospital. I'm traveling right now, but should have some time this weekend to dump my questions on you. 😏 Much appreciated.

    CHF, potential transplant candidate

  • 4.  RE: Pre-Transplant Support Group

    Posted 11-30-2022 10:33

    I know what you are going through. I too have been shocked many times from my defibrillator.  It will be 3 years on Jan 27 since my Heart Transplant. 
    I'm avialable if you would like to talk about getting a transplant, I will be more than happy to answer any questions you may have, since I've been through it.
    My email cell 706-889-6051
    I hope to be hearing from you.

    Joe Parisi

    Joe Parisi
    Silver Springs FL