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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.
AHAModerator, February 16, 2021 9:35am EST
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!
The AHA Team
JamesPL, February 17, 2021 7:52pm EST
So glad your recovery is going so well! Wishing you continued success in your rehab and recovery!