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I was a 47 year old biology professor in Tampa, FL, when my primary doc sent me to a cardiologist. I doubted there was much wrong with my heart, though I had a long history of syncope and other symptoms. The cardiologist told me I had HCM; I had a gradient in the 20s and no arrhythmias. I started on beta blockers.
Seven years later, while traveling in Argentina, I passed out in our hotel, and then three more times in the hospital. An echo revealed a gradient of 120. The Buenos Aires doc told me I needed to go home, see my cardiologist, and probably have surgery. When I got home, my Tampa cardiologist did another echo, and agreed: I needed a myectomy.
He´d never sent anyone for a myectomy before, and suggested we both do some research to see where I should go. While he called around, I did some web research and talked to an MD friend. Everything suggested I should go to Cleveland Clinic, Mayo Clinic, or Tufts. Then I found the HCMA web site; many posts there suggested that I call Lisa Salberg, so I did. After hearing my story and asking some questions, Lisa told me that, indeed, the best places I could go were the three I'd identified. We talked about how to choose; I chose Cleveland Clinic for personal reasons. Lisa gave me Dr. Lever's office number and told me who to speak with there. An hour or so later, my cardiologist called and told me he'd talked to several heart surgeons in the area he'd worked with, and couldn't recommend that I see any of them. One of them had told him "Sure, I could do it; I've done a couple of those before." He said "You don't want someone who's done a couple of them. You want someone who does a couple every week." Then he told me that everyone but the surgeons suggested he send me to Cleveland, Mayo, or Tufts. So the decision was pretty easy!
I called Dr. Lever's office, and was telling Karen, his secretary, about all the syncope. She said "just a minute," put me on hold, and a couple of minutes later Dr. Lever came on the phone. After hearing my story and asking some questions, he asked if I could come to Cleveland in two weeks. Gulp. Sure.
The myectomy was pretty rough on me, and I had a number of complications afterward. But it's been 13 years since then, and I've not passed out once, had no chest pain, and only very occasional SOB. I've had an ablation for atrial flutter in Tampa, and one for afib in Cleveland. I've had no episodes of either arrhythmia since, though I know I may in the future. I'm 67 now, living in Albuquerque, NM, and went hiking this morning. I bicycle regularly. I've traveled a lot in recent years, including a number of overseas trips involving lots of walking. There are certainly things I don't try to do, and HCM may be a reason, but I don't feel very limited.
The HCMA helped me find my way to a myectomy when I needed one, and helped me have it done quickly. It gave me a lot of information about the sorts of problems I might expect. When I needed an afib ablation, the HCMA gave me much-needed advice about how to decide on having it done, and where to do it. I've learned a lot from being an active participant in the HCMA discussion group. I started participating while recovering from my myectomy. I found myself helping explain some of the genetic issues, and sometimes the physiological issues, to others. One day Lisa called and asked me to be a moderator. I was surprised and honored, but said yes, to give something back. I've played that role ever since. I think the HCMA has mostly benefited, but I know that I have! I think it´s made me a better person.