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HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
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I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
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@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.
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1 Reaction@jachrist I have told my brothers. Will a doctor do the transthoracic echo based on my diagnosis alone? Probably depends on the insurance I suppose?
@emo44 I have just moved away from Optum to a smaller health care organization - Western Washington Medical Group. They are affiliated with Medicare. I'm in the Seattle area, so access to lots of doctors and hospitals that are probably a Center of Excellence. My cardiologist is a pretty young guy, emigrated from Thailand, although I am not sure where he went to school. He seems pretty sharp...
I guess the MRI will give him the information he needs. The terminology is overwhelming, I will try to find info from the web pages you've recommended. Thank you!
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1 Reaction@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!
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2 ReactionsNo doubt your Cardiologist should have an Echocardiogram done.
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1 Reaction@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?
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2 Reactions@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.
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2 Reactions@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
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1 Reaction@karukgirl
Hi Good evening
How are you stay blessed always
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