← Return to HCM-ers: Introduce yourself or just say hi

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@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

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Replies to "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..."

Cynthia, this group is so fortunate to have you and all your dedicated efforts to educate and help people with HCM. I was diagnosed with HCM about 1.5 years ago while visiting a NP for the flu. She heard a murmur and a few hours later after an echocardiogram they said I had HCM. I tried medicine for several months and still felt rotten, so last December I underwent a septal myectomy at Mayo and now feel wonderful. It’s changed my life and I have not felt this good in 30 years. (I’m 55 now) The care here has been outstanding from diagnosis to rehab. I look forward to contributing when I can to the group and offering the patient perspective.

Hi, this is Deb from Iowa! I was diagnosed about 8 or 9 years ago with HOCM, I have a Pacemaker and Defibrillator in place. Waiting for my Cardiologist to make me an appointment with Mayo for a Myectomy. Thank you so much for starting this group!

Dear Cynthia, thank you so much for your invalueable contribution about how to live with HCM, I always follow and read your sharing experience and knowledge about it.

Thank you Cynthia. I hope this group is still active.

Hello, this question may have been asked and answered, but I didn’t see it. I live in Mississippi and was diagnosed in Feb ‘17 with HOCM. My local family doctor has suggested I see a specialist as a proactive measure. I have had an echo and electocardiogram from our local cardiologist. Where would you suggest I go? I follow another group that list the HCM Centers of Excellence but I just don’t know where to begin. Any input is appreciated.

@tkterrell just a note of reassurance. I’m 62 and had symptoms in third grade when i was 8 years old and kept getting short of breath on the playground. You will learn to adjust, your body will support you and there are treatment options being tested and developed all the time. I self-referred myself to Mayo in Rochester. 10 years ago became they specialize in HCM diagnosis and treatment. I go every few years to monitor the status of my condition. Good luck. Let me know if I can be a sounding board for you. I is shocking and scary at first and seeing that others live a normal life will help. Gwen

Hello Cynthia! Terry from Michigan ❤️

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