HCM-ers: Introduce yourself or just say hi

Hi there, My husband had septal myectomy at Mayo in Rochester Dr Schaff was his surgeon. He was diagnosed with HCM at 43 and was 74 when he had the surgery. Despite the ever increasing symptoms was still quite active. Earlier in the year he had a complete heart block and had a pacemaker/ defibrillator implanted, his HCM became obstructive to the point of several episodes of syncope. His cardiologist in San Diego recommended Mayo but we had done lots of research so Rochester it was.
His surgery went well was in hospital for 4 days traveling home 2 days later.
I think he will now acknowledge how sick he was and how amazing he has felt since.
I’m a former nurse so was worried about his recuperation, but he was fine took about 6 weeks to resume normalcy.
One thing I don’t see mentioned on this site is the emotional effect of open heart surgery my husband had several days of depression so be aware and get help for that.
Wishing you all the positive thoughts in the world
Maureen

Thank you for sharing your story. I'm happy your husband is doing so well. It's encouraging to hear these stories and have the benefit of being able to "look back", hindsight I suppose, and help others who now face what you have already gone through. I have read about how common depression is in recovery, and glad it didn't last long. I suppose it's helpful to know all the things, good and bad, that go along with something so major. Thank you for sharing. I appreciate the information. Best regards

Hi Wayne
I have HOCM and had a total knee replacement in august 2018. My docs knew of my heart condition and my surgery was in a larger hospital with good cardiac support.
All went well.
I was very glad to get it done and out of the way
Good luck

Thank you. Where did you get yours done?

A small specialty group in Indiana
Midwest Center for Joint Replacement
There are many good docs that work from big hospitals
I just had a septal myectomy at Cleveland Clinic
You may want to go somewhere like that
I would love to personally talk to you if you want

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

Hi I’m Terry and I live in Michigan. I’ve known I have HCOM for 9 years. First discovered during Ecco To prepare for blood cancer treatment. I knew there was an issue but doctors said it was anxiety. I have a small aneurysm and scarring. I have a defibrillator implanted. I tire easily! I go to U of M and Cleveland alternately. Doing ok. Just too chunky!

Thank you, you will get lots of support from this group so stay in touch. Take care
Maureen