HCM-ers: Introduce yourself or just say hi

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

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.

@cynaburst hi my name is Sheryl. I am 75 yrs old. I lost my father when I was 2 and my sister when I was 39. They were both 42 and died in their sleep. Not having an autopsy it is assumed they had hcm. I had a full cardio work up at 45 and cardio said I was the healthiest he had seen. Had ekgs every year but it wasn’t until a new pcp told me to see a cardio because my ekg was abnormal. This was a couple of years ago. Went had tests and was diagnosed with hcm. Saw an electro also and it was decided then nothing more was necessary. Saw the cardio every year, but it wasn’t until this year that after an endoscopy and colonoscopy that there were extra beats the anesthesio heard. My dr had me wear a monitor, an echo was done and everything changed. Seems it got worse after I was told considering my age when it was discovered it would not. I was put on metropol 25 mg, but due to a horrific stomach could not tolerate it and did not take anymore after one dose. I feel worse now than I ever did and am waiting for a pvc ablation next month. I feel overwhelmed, scared and anxious which is not helping my hcm. Dr said I might need a defibrillator, but am taking it one step at a time. I was told an MRI would help, but can’t go there. Thank you for listening. I feel all alone.

@luckyhowreyou Hi Sheryl and welcome to the group. You are definitely not alone. I have lost 3 relatives to HCM and I am now 61. I have been treated for this disease since I was in my 30s. With modern interventions, it is quite possible to live a normal life span with HCM. The key is to be treated by a doctor and at a center that has specific expertise with HCM. That is how I found myself to Mayo Clinic even though I live in California.

I would advise you to take a breath. You are 75 and have probably lived with this condition for years. PVCs are very common in the entire population and not just HCM. They are usually considered harmless.

My suggestion to you is to make sure that you are seeing a HCM expert for a complete evalutation before undergoing any invasive procedures. I have had an implantable defibrillator for 24 years but only got it after seeking multiple opinions. I have also been taking metoprolol for 20 years. It makes you feel a little weird at first but you do get used to it. It is a very useful drug.

Try to reassure yourself that this is not something that developed overnight and you are able to take the time that it deserves to find the right doctor with experience that you trust and go from there. I understand it is hard not to get freaked out. I myself am going through a hard patch right now and I get it. But this post you are responding to is 10 years old and I am still here and have been living with HCM for 27 years. It is definitely a treatable condition.

If you haven't already found the Hypertrophic Cardiomyopathy Association website, that is a great place to find information and HCM experts. 4hcm.org

Wishing you all the best and you are definitely not alone.

@ronaldpetrovich what is a septal myectomy?

@luckyhowreyou It is an open heart surgery that reduces the septum and trims it away from the mitral valve which is what causes obstruction in obstructive HCM. It is a surgery that I, Ron, and many others have had to help us feel better.

These days there is a newer option instead of myectomy. There are medications called myosin modulators such as Camzyos and Myqorzo. These medications can help obviate the need for surgery. But they are only an option for obstructive HCM at the moment. The hope is that their indication will be expanded. There was a positive trial called ACACIA HCM of the drug aficamten or Myqorzo which showed positive results in non obstructive HCM.