Mended Hearts Open Forum

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  • 1.  40 yr Long-Haulers

    Posted 3 hours ago

    Hello Everyone,

    This is my first post even though I've been a member for almost 10 years.

    July 2026, I will have had my MVR, MVR, and Tricuspid ring implanted for 40 years! Yes, I got them all implanted in one long surgery in July 1986. I was 17 yrs old during the summer between my Junior & Senior yrs of high school. At the time, I was the youngest patient on the recovery floor and had the most done.

    Luckily, I live in the Cleveland/Akron, OH area; the surgery was performed at the Cleveland Clinic.

    My parents warned me there was a family genetic condition that I was susceptible to. It was diagnosed as x-linked dilated cardiomyopathy. (The X chromosome I received from my mother had the condition).

    Have I had 'speed bumps'? Yes. (one valve had to be replaced, I am in chronic a-fib, and have a pacemaker) However, in these 40 yrs, I have also developed many friendships I would've never been able to meet without my surgery, graduated college, been married/divorced, and have a son now in his sophomore year of college (he doesn't have my condition because he got my healthy Y-chromosome instead of my defective X)

    If there are any members with many years post-surgery, I'd love to hear from you. Maybe I can give support or insights into life as a 'long hauler'. If there is a community 

    To everyone out there, treat your heart surgery as a gift; you have survived to continue your life and are enjoying things you might have missed. 



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    Robert Zielske
    Stow OH

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  • 2.  RE: 40 yr Long-Haulers

    Posted 3 hours ago
    You are right Robert.  Very uplifting. Thanks. So glad for your son
    Sent from my iPhone