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

@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!

@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 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

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

@thehellyousay, Welcome to Mayo Clinic Connect.
It is quite overwhelming when you first learn you have hypertrophic cardiomyopathy.
When I was first told this is what I had, I had been misdiagnosed for five years with various other heart conditions, none of which I had.
One one hand, I was grateful to know what was really wrong with me. One the other, I was caught off guard because I was super active and a runner/walker/hiker/biker. I knew something was wrong. I just didn't want it! I was 62 when I had open heart surgery.

One of the best things you can do is educate yourself on what is living inside your chest. Here is a link to the Mayo Clinic's Hypertrophic Cardiomyopathy site:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Beyond educating yourself, it will be a process of learning where you are in this HCM journey. Making it to 68 with no indication you had this condition is a good thing! This is the disease that takes the life of young, strong athletes.
SCD, sudden cardiac death, is the big, bad, scary event that strikes fear into the heart of every HCM patient.
It is the reason you want to get to the very best cardiologist, highly trained in HCM, and close to or willing to go to a COE (center of excellence).
The cardiac MRI you will undergo, will help further the point you are with HCM.
Depending on all the information gathered, your doctor will sit down with you and go over your treatment options.
By the time I made it to the Mayo Clinic, it was my third opinion. I went to two COE's, and the cardiology department at the hospital I worked for. I had to fly across the country to get to Rochester, MN.
Mayo Clinic told me my obstruction was severe, my heart was failing, and I needed open heart surgery. I had been on four or five different beta blockers and calcium channel blockers, which did not work for me. I was shocked to hear "open heart surgery" in the conversation!

I would encourage you to not be afraid to seek a second opinion at a COE for hypertrophic cardiomyopathy. Here is a link to the HCM group that also has a source to find COEs by state:
https://www.4hcm.org
You have so much to process @thehellyousay, so just try and take it slowly and understand as much as you can in your own time.
The MRI and echo are good tests to show the LVOT (left ventricular outflow tract) and if the septum is enlarged and by how much.
Have you had a chance to read some of the stories here on Connect?

@thehellyousay I see that both @jachrist and @emo44 have responded with such helpful information! Be sure to read https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 and learn all you can about this inherited condition which we've each had all of our lives whether we knew it or not. I was in my later 50's when a heart murmur was heard for the first time. I was diagnosed with HCM when it did not go away and further testing was done. We are all so different, mine progressed over the next 20 years to the point where I had a syncope at age 75 and then was VERY strongly advised to have a septal myectomy at age almost 76 in 2022. Some people have been able to be helped by ablation or by a drug such as Camzyos. There is no one-size-fits-all. Are you a patient of a cardiologist that is well versed in HCM or at a COE (Center of Excellence)? I am glad @emo44 suggested contacting the 4HCM.org (Hypertrophic Cardiomyopathy Association) via their website. (I am a Face of HCM - you can read my story by looking for Linda who has red hair and is standing on a ship). I am also glad that @jachrist strongly suggested that your blood relatives get checked out. Looking back, I know my dad had it, no official diagnosis but the SOB (shortness of breath) and fatigue were a part of his life from middle age onward, passed away from another medical problem. My son (49) gets an echo every 5 years, partially covered by insurance because a parent has HCM. My still-growing grandson (16) gets an echo every 2 years, grandson not covered by insurance, so they pay out of pocket. Many people have an MRI, I never had one until I was going through the 2 days of testing at Mayo before surgery, the echo "said it all." I hope you will inform us about how you are doing along this journey and ask questions. Most of all, know that many of us started with the same "HCM - never heard of it" as well as the fear/disbelief of the unknown. Yet here we are telling our tales!

@thehellyousay, Welcome to Mayo Clinic Connect.
It is quite overwhelming when you first learn you have hypertrophic cardiomyopathy.
When I was first told this is what I had, I had been misdiagnosed for five years with various other heart conditions, none of which I had.
One one hand, I was grateful to know what was really wrong with me. One the other, I was caught off guard because I was super active and a runner/walker/hiker/biker. I knew something was wrong. I just didn't want it! I was 62 when I had open heart surgery.

One of the best things you can do is educate yourself on what is living inside your chest. Here is a link to the Mayo Clinic's Hypertrophic Cardiomyopathy site:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Beyond educating yourself, it will be a process of learning where you are in this HCM journey. Making it to 68 with no indication you had this condition is a good thing! This is the disease that takes the life of young, strong athletes.
SCD, sudden cardiac death, is the big, bad, scary event that strikes fear into the heart of every HCM patient.
It is the reason you want to get to the very best cardiologist, highly trained in HCM, and close to or willing to go to a COE (center of excellence).
The cardiac MRI you will undergo, will help further the point you are with HCM.
Depending on all the information gathered, your doctor will sit down with you and go over your treatment options.
By the time I made it to the Mayo Clinic, it was my third opinion. I went to two COE's, and the cardiology department at the hospital I worked for. I had to fly across the country to get to Rochester, MN.
Mayo Clinic told me my obstruction was severe, my heart was failing, and I needed open heart surgery. I had been on four or five different beta blockers and calcium channel blockers, which did not work for me. I was shocked to hear "open heart surgery" in the conversation!

I would encourage you to not be afraid to seek a second opinion at a COE for hypertrophic cardiomyopathy. Here is a link to the HCM group that also has a source to find COEs by state:
https://www.4hcm.org
You have so much to process @thehellyousay, so just try and take it slowly and understand as much as you can in your own time.
The MRI and echo are good tests to show the LVOT (left ventricular outflow tract) and if the septum is enlarged and by how much.
Have you had a chance to read some of the stories here on Connect?

Just found out that I have HCM. I don't fully understand how dangerous it must be because if I'm 68 and lived with it most of my life, then I must not have a serious problem? At least that's what I'm going with for now.

I have been prescribed 50mg of Metaprolol Succinate which I take at bedtime. My cardiologist says that it will slow down my heart rate. It may lower my blood pressure, but all my life I've always been at 120/80 all the time, never experienced high blood pressure. I have taken no medications all my life before this prescription.

Just wondering what's next? I have done the stress test (passed, barely) and it was the transthoracic Echo that led to the diagnosis. Going in for an MRI in a week or so. Looking for information about potential treatments, if any, to stave off a heart attack. And what this means for my quality of life as I head into my Golden Years.