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Profile picture for thehellyousay @thehellyousay

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.

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Replies to "Just found out that I have HCM. I don't fully understand how dangerous it must be..."

@thehellyousay
Yes having HCM is definitely a serious heart disease and metropolol is a common medication that Cartiologist prescribe. After testing they will determine the severity of the disease and you may need an ablation so your heart can pump an adequate blood supply. I personally have had two incidents of sudden cardiac arrest due to HOCM and had an alcohol septal ablation. I also have an ICD (defibrillator) due to the sudden cardiac arrest. HCM is also hereditary and your family members should be tested as well.
Best of luck
Jim

@thehellyousay ,

Good morning! It is scary to find out you have HCM. I was diagnosed at age 78, and like you was healthy and had no issues except was having palpitations, I have Apical HCM (non-obstructive). Since I was first diagnosed my HCM has progressed. I developed symptomatic Afib and my hypertrophy has increased and I have a great deal of diastolic dysfunction.

We all are different when it comes to this disease, so it is important to see a cardiologist who sees a large volume of HCM patients. Do you see a local cardiologist or are you able to go to a COE (Center of Excellence) with a HCM Clinic? I travel about 5 hours to the HCM Clinic at Mayo. Have had a wonderful experience there. I suggest you check out the website for the Hypertrophic Cardiomyopathy Association. They have a web page and a Facebook page. Lots of information and a list of all COEs. If you join, you will have an hour intake call which is a great help. This journey is different for all of us and it is important to have a care team that really understands this disease. Good luck with you HCM journey.

@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?