Kawayomaana
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Kawayomaana, February 14,  2021  4:07pm EST

Newly transplanted

Hey all,

I just returned from Cleveland Clinic after a successful heart transplant thanksgiving night.  
my story starts January 3 2014, when I ended up in the emergency room in rapid afib.  I ended up being admitted after multiple medications would not convert me, and then ended up being cardioverted.  For the next two years, I was misdiagnosed and miss treated (very common in my disease).  Finally, in 2016, my cardiologist sends me for an mri, as I was not getting any better.  I was finally diagnosed with Hypertrophic Obstructive Cardiomyopathy.  
Fast forward a couple of years, and I land in Virginia.  I went to UVa, which is a supposed center of excellence for HCM (had I stayed there,I'd be dead), and decided after the first meeting to go back to Cleveland Clinic, where I had my septal myectomy the year before.  My EF had fallen from 60% down to 25% in a 6 month time frame, with no explanation as to why.

multiple surgeries, ablations, ICD to a CRT-D upgrade and I was listed for a heart December 2019.  I got my call the night before thanksgiving, and was flown to Cleveland in their private jet.  I went into the OR at 11pm that night, and, for the most part, have made a remarkable recovery.  It has not been without its issues, but I'm grateful, I'm alive, and I am hoping to ge back to work after my biopsy next week.

im very happy to speak to,others about the journey I've been on.  I especially would like to connect with other HCM people and transplant people.

Thank you for your time.

Debbie

2 Replies
  • AHAModerator
    AHAModerator, February 16,  2021  9:35am EST

    Hi Debbie,

    Thank you for sharing your story with the support network. I'm so happy to hear that you're recovering after being misdiagnosed for so long. I can share this video with you that features stories from others who have recovered from heart surgery. Please keep us updated on how you're doing!

    Best,

    The AHA Team

  • JamesPL
    JamesPL, February 17,  2021  7:52pm EST

    Hi Debbie,

    So glad your recovery is going so well! Wishing you continued success in your rehab and recovery! 

    Jim

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