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Feb 19, 2009 · Leave a Reply

Hypertrophic Cardiomyopathy - Bernyce's Story

By Lee Aase, Director, Mayo Clinic Social Media Network @LeeAase

The Internet makes it possible for Mayo Clinic to gather its worldwide community of 500,000 annual patients and 50,000 employees through Sharing Mayo Clinic. Disease-oriented patient groups likewise have formed online, where patients share their stories and offer support.

The Hypertrophic Cardiomyopathy Association is one such patient group, which has both online and in-person components, including a community forum and an annual meeting to be held this year in late May in New Jersey. Several Mayo Clinic cardiologists and surgeons serve on the association's medical advisors group.

A patient named Bernyce recently shared her story on the HCMA Web site. Here's an excerpt:

August 27 2007 – I wrote to the cardiologist to let him know that I had been quite distressed over the weekend with the same complaints and that I had tried to reach him but he was not on call. His associate told me to double up on the Lanoxin but it did not help. I was so exhausted I could barely walk from the bathroom to the bedroom for lack of breath.

I went to the Mayo Clinic in Rochester, Minnesota. I was fortunate that my daughter accompanied me and she pushed me in a wheelchair on the trip all over the clinic to my several appointments, which included an echocardiogram that lasted for two hours and was done by two technicians and two medical doctors. There were several other tests as well.

August 29, 2007 -- I met with Dr.Ommen, one of the nicest and kindest doctors I have ever met. He reviewed the tests with me and finally told me that I needed surgery for my HCM, and for an aortic valve replacement and possibly a mitral valve replacement as well. He was not certain about the mitral valve because the echo left some things unclear. I returned home and called the Mayo Clinic to make an appointment for surgery with Dr. Joseph Dearani.

You can read the rest of Bernyce's five-year story on the HCMA site, where she also expresses gratitude for the existence of organizations like HCMA that provide resources for patients like her. Here is her conclusion:

I am 81 years old and feel reborn again.

I am eternally grateful to the HCMA for all the information they make available. I am eternally grateful that the HCMA helped me to find Dr’s Ommen and Dearani and for the time they spent with me on the phone before and after surgery. I'm eternally grateful that there are such places as the Mayo Clinic and I am proud that it is in the United States and I told that to many people that I've met there and others at home about my experience. The attitude of all of the people who work there is simply superb. I wish I could say that for all the clinics and hospitals I've been to and there have been many including the National Institute of Health where I was in a protocol for 15 years, unrelated to hypertrophic cardiomyopathy. At Mayo the attention and care of their nurses is something I have not seen anywhere else. The cleanliness and punctuality throughout the place was marvelous. I cannot speak highly enough about the Mayo Clinic.

Please excuse me for being so long-winded but I wanted to share my experience with you all. If you should want to put any of this on your website, you have my permission to do so.

Tags: Aortic Valve Replacement, HCM, HCMA, heart & heart surgery, hypertrophic cardiomyopathy

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