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Anyone Here Diagnosed With Hypertrophic Obstructive Cardiomyopathy ? I Know There Is No Cure, But What Do They Do To Relieve The Symptoms ?

Anyone Here Diagnosed With Hypertrophic Obstructive Cardiomyopathy ? I Know There Is No Cure, But What Do They Do To Relieve The Symptoms ?

about 5 years ago
A MyHeartDiseaseTeam Member

I have CHF caused by HOCM and am part of the 5% who survived a heart attack. I survived because I did not ignore the symptoms and was taken to a first rate hospital immediately. I also credit the EMT who had enough training to know that not every heart attack presents the same way. Now, 9 years later, 2nd heart attack, 2 valve replacements, 1 device implant & removal, endocarditis, kidney failure, and the worst round of antibiotics imaginable I AM STILL HERE and enjoying my life. After all of this, I am convinced that the precise moment a person will pass from this earth is preordained and worrying about it will not change anything. Trust your doctors, do what they say, enjoy your life to the fullest you are able. Thank God for every day.

over 2 years ago
A MyHeartDiseaseTeam Member

Yes praise God your cancer free!Lobectomy tough surgery!Open heart should be easy for you.Being scared is normal,but that surgety is routine these days.I havent had,but am Respiratory Therapist and have lots if postop heart patients.Youll be fine.Do what nurses and therapist ask of you and God will see you thru it.Prayers for you stay positive!!!🙏🙏🙏🙏❤⚘

over 3 years ago
A MyHeartDiseaseTeam Member

Yes, I have Hypertrophic Obstructive Cardiomyopathy as well as aortic regurgitation and other non-heart issues. One of my other problems is a hip without hardly any cartilage remaining. Four or five years ago I was told I was a candidate for a full hip replacement, but my cardiologist strongly urged me not to pursue it. When I asked why he said something about a thickened heart muscle. He explained to me what a "big deal" type surgery it would be if/when I needed my aortic valve replaced, but I never quite understood about the cardiomyopathy until I saw a news story on TV about a high school athlete who'd collapsed on the basketball court. The reporter said the young athlete had hypertrophic cardiomyopathy and mentioned that only about 5% of people with that condition survive if they go into cardiac arrest. Needless to say, that scared me. I guess I'll be okay with using a cane or walker the rest of my life vs. taking a chance on hip surgery!

Since I have more than one heart condition, I'm not sure I know what the symptoms of HOC are. I only know it makes me high risk for any type of surgery. What symptoms have you experienced?

I don't know which of the medications I'm on are related to my HOC, but they do keep an eye on it by having me go for an echocardiogram every so often to check my ejection factor.

about 5 years ago
A MyHeartDiseaseTeam Member

I have HOCM. I was supposed to have open heart surgery at Cleveland Clinic last week. The doctors kept mentioning medicine and I asked why am I having such a major surgery (also have mitral valve prolapse) if there is a medicine. I was told that it is not out yet, but should be out by the summer. It is the first medication that actually helps the disease not just the symptoms. I am waiting for the medicine as I am terrified to have the surgery as I am 78 years old. I am in relative good health other than that. I called Bristol Myers, the manufacturer, but I could not get any information from them. It was supposed to be approved Jan. 28, 2022 Mostly, I get shortness of breath and I am very tired. My doctor says the tiredness is not from my heart, but I don't believe him because of all I read. I wish there was a way all of us with hcm could communicate. I feel for the other people with heart disease, but obviously this is my main interest.

5 months ago
A MyHeartDiseaseTeam Member

Ginny,
Hi it's Robin I have the same heart condition you do. Has that new medicine come out yet and what is it's name? I hope this finds you well and praying for you 🙏
Robin 🦋

19 days ago

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