HCM-ers: Introduce yourself or just say hi

@walkinggirl

Glad that you also recommended blood relatives have an Echocardiogram. One in every 500 have HCM and if you have HCM or HOCM there is a 50/50 chance that your family members will get it as well. There are 6 brothers and sisters in my family and two of us have HCM/HOCM. My Daughter also has been tested and fortunately she was good but needs to test every 5 years.
Take Care
Jim

@jachrist Jim, I recently read that the incidence of HCM is one in every 250! Imagine! Better diagnosis techniques? More awareness and testing? Other than the fact that my gene is as yet undiscovered and my son and grandson get echoes, no one else in my extended family (children and grandchildren and - yikes - great grandchildren of my dad's siblings), seem to have HCM. Yes, all have been informed.

@walkinggirl
1 in every 250 is astounding! It is so critical for relatives to have echocardiograms plus their odds of having HCM/HOCM is 50-50. So many patients are miss diagnosed and there is no excuse. Testing is non intrusive and critical. I was miss diagnosed for 16 years and my breathing continued to worsen. I even had Pulmonologist and Cartiologist who miss diagnosed me. I was told that I was an asthmatic.
Jim

@jachrist I was fortunate that my family doctor noticed a new heart murmur which did not go away in 2 years. I was referred to a cardiology group and assigned to a doctor who trained at a place that is now a COE for HCM. After the tests I knew I had HCM, never heard of it!

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

@cynaburst
I had my myectomy last September at Mayo and feel great.
I’m wondering what tips you have about continued health, since it never goes away? I know about controlling blood pressure, exercise and healthy diet , but is that enough to keep me from needing another surgery in the future? I walk about 4-5 miles a day.

C. Elizabeth at 84, recovery from recent asthmatic bronchitis results in low heart rate with coronary artery spasms with an LAD myocardial bridge. My cardiology group noticeably has slowed its response for effective treatment. A month later, my appointment for a cardiac monitor is finally accepted for next week. Is Medicare planning to not care for me?My heart rate dropped to 44 this early morning!

I have hypertrophic cardiomyopathy with a "suicidal heart" at age 84. Do I have to provide the ultrasound report from two years ago? My interventional cardiologist is very skeptical of my better health.
With a recent asthmatic bronchitis viral infection, I have a lower heart rate about 2 am.
There is a new pneumovirus reported as more infectious this year according to recent reports.
I'm hoping that I gradually have better heart health. I'm taking daily multivitamins with more vitamin C to reduce my hands and arms bruising, not just weekly! I have a reciprocal exercise cycle at home.
After 3 series of cardiac rehabilitation locally, the last one was not as good; I think I will do better at home.
Living in Eastern Washington State, I welcome our springtime which will include drought.