Cardiomyopathy

Yes. Can it be reversed?

@debroo Welcome to Connect! You found a discussion title that began almost 10 years ago when the HCM (hypertrophic cardiomyopathy) group began in the early days of Connect! Since that time, many. many people - and now you - have joined the right place for big-hearted people. Your question about reversing HCM is an excellent one, each of us who has been diagnosed with it and never heard of it before had that very same question.

We share experiences and information without giving medical advice. It is very desirable to learn all you can about HCM. Knowledge is power and learning helps you generate questions for your doctor to enhance your understanding.

As you may have read from a couple of the comments, HCM is inherited. My dad was undiagnosed except he mentioned he had a heart murmur, and I remember he easily became SOB (short of breath). I am trying to be sure you and others know what all the acronyms represent, there are so many to be understood when learning about HCM and receiving treatment.

I am not a medical person, but I am aware that this horrible disease cannot be reversed. Once we are diagnosed, we need to remain under the care of a cardiologist. It is very, very, highly recommended that HCM patients receive their care at a COE (Center of Excellence) for this disease. The doctors there see a high volume of HCM patients in all stages and different presentations of this disease. We are all so different, their collective knowledge from training and experience result in the very best treatment for your very unique case of HCM. My home cardiologist was trained at a place that is now a COE, and he sent me to Mayo when I needed surgery.

HCM is a managed disease. You may be told to do nothing except get checked on a regular schedule - or - if you have symptoms, medication or surgery may be recommended. To help you learn more, you may wish to read this link: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/diagnosis-treatment/drc-20350204. This link repeats the other a bit, but does have some additional facts https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198.

I also recommend asking about genetic testing. In 2022, "they" looked at 123 different genes known to cause HCM, mine was among those as yet undiscovered. The result is that I told all of my blood relatives and my son and grandson get echocardiograms, every 5 years for my son and every 2 for my teenaged grandson.

I also recommend looking at 4hcm.org which is the website for the Hypertrophic Cardiology Association. Please schedule an intake interview, these people are unbelievably helpful in guiding you on your journey in living with HCM. There are even zoom meetings on different topics related to HCM.

When did you discover you have HCM? How are your symptoms impacting your life? Has anyone else in your family been diagnosed? What has your doctor suggested for you so far? Again, welcome to Connect!

@walkinggirl….. thank you so much for all of this valuable information. I never thought to look on YouTube for it. I was just diagnosed with it. I had a watchman placed and an ablation and I’m still having problems. My biggest concern is loss of energy and the shortness of breath. I am currently on metoprolol succinate, the generic form of entresto, diltiazam and multiple B vitamins. I have a follow up next week with my electrophysiologist. As far as I know no one in my family had it but they all passed away in their 40’s from msssive heart attacks so there’s no way to check. Thankyou so much for contacting me and offering this valuable information. Wishing you well, Debroo

@debroo I am so glad to read that you are actively following up on your HCM. Best wishes for a productive visit with your electrophysiologist. Your symptoms of loss of energy and SOB are so typical of HCM. The massive heart attacks you describe for your relatives in their 40's is a clue, sudden death is a known fact for some HCM people. That's not to say they definitely had HCM, we will never know, but it fits the pattern of circumstantial evidence.

You have a Watchman, other than knowing they are used to help with AFib, I am unfamiliar with that device. How was it determined that you would benefit from having a Watchman?Where do you receive care? I am hoping you will keep us informed on how things are going and how you are feeling, those of us in the HCM discussions value sharing. Our collective trove of knowledge and experience benefit all of us.

I learn from everyone else and hopefully I’ll have info that someone can benefit from hearing. I’ve had afib for quite a few years off and in then. Last year it turned into constant afib; I was advised I would be in afib for the rest of my life and would have to be on eliquis for the rest of my life. I have only one kidney and don’t handle meds very well. I had the watchman implanted so that I could go off eliquis. If I have a blood clot the device should catch it before it went outside my body. The cardio myopathy was discovered sometime between the installation of the watchman and an ablation. I believe it’s been there for a few years?? But now it’s gotten to the point when it needs to be treated? So I find out more next week when I see the electrophysisist. Thankyou for reaching out and I look forward to learning!! Take care and Thankyou Debroo

@walkinggirl
I have experienced fatigue or loss of energy as my constant symptom all day long - recent echo on 10 mg myqorzo showed great improvement- still battling fatigue but much better re sob- don’t know if HCM or Metropolol or both

@bbisno I am glad that your SOB seems to be helped with Myqorzo and Metoprolol. We are all walking chemical factories and how Myqorzo and Metoprolol affect you is as unique as you are as an individual when compared to everyone else. I hope that your fatigue issues are resolved as you continue taking those drugs.

At this time, you probably know that Metoprolol is a beta blocker blood pressure med (I take 50mg in the morning daily since my septal myectomy) and like all meds, there are side effects. Here is a link to read about Metoprolol's side effects. Please scroll down to the bottom of the article to read the side effects section. When these drugs are studied, every side effect noted by anyone is listed, if 50, 000 people are studied and 1 has a side effect, it's listed. https://www.mayoclinic.org/drugs-supplements/metoprolol-oral-route/description/drg-20071141

How did your doctor choose Myqorozo over Camzyos? I believe Myqorzo is still in the study phase. Thank you for the update and do continue to keep us posted!

@walkinggirl
Thank you for your comment. I believe my new cardiologist at univ of Miami where I live chose myqorzo in 2026 as the newer and better drug available. A northwestern cardiologist in Chicago in 2023 where I spend summers would prescribe Camzyos only if I would agree to spend at least 6 months in Chicago which I could not do. I take 125 mg of Metropolol. I was diagnosed with HCM after a murmur and echo in 2022 in Chicago - um docs not seeing new patients after COVID yet and my um pcp retired during covid.