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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 14 hours ago | Replies (1163)Comment receiving replies
@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?
Replies to "@thehellyousay, Welcome to Mayo Clinic Connect. It is quite overwhelming when you first learn you have..."
@karukgirl
Hi Good evening
How are you stay blessed always
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@karukgirl Thank you for your detailed information. I have found my COEs which is UofW Medicine and Virginia Mason. It is humbling to think that I may need to enlist the help of so many smart and talented people. And so glad I joined this forum, it's been very helpful already.
I've never really been a runner/biker, etc., although lately I have found that riding the recumbent bicycle and pulling on the rowing machine has given me more energy and helped a bit with the waistline. It's funny (not funny) because I had a "spell" in 2008 when I was a mere 50 years old. It happened in Reno and they did the standard EKG and thought maybe I was just dehydrated. I chocked it up to Bloody Mary's and sodium infused bacon and eggs. I also remember in the 90's trying to play basketball with younger guys and getting so winded and having chest pains from it, but they always quickly subsided so I assumed I was just not taking good care of myself, which, at the time, was because I was immortal. I have been diagnosed with asthma and doctors here and there have said I have a heart murmur, but that was just with a stethoscope. They told me it was "nothing to worry about" so I didn't.
I am going to take your advice and absorb things slowly. I will read up and try to understand more, although I think listening to others with the condition is more helpful than scaring the crap out of myself with Google searches. Until just a week ago, I thought it was simple afib which a lot of my older friends and relatives have experienced. The lingo is a bit intimidating, but it's going to be important to understand it to make better decisions about the treatments available.