Hypertrophic Cardiomyopathy: Dealing with Shortness-of-breath

Posted by lakeview @lakeview, Nov 11, 2024

I have Hypertrophic Cartiomyopathy….suffer with shortness of breath, no matter what I do….when I go out, I have to use a wheelchair, can’t walk more than 30 feet without getting out of breath. Can anyone relate to this problem? If so please let me know your story. I am being treated by a top notch Cardiologist…but getting no where. I am to old for surgery (80) years old. Any comments would be greatly appreciated.
Thank you, MMB

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acarla | @acarla | Nov 27, 2024

Make sure you are not anemic. Anemia impacts my OHC symptoms (shortness of breath, low blood pressure, dizziness ess) a great deal.

manuelpo | @manuelpo | Nov 27, 2024

I have Hypertrophic obstructive cardiomyopathy (HOCM) and as soon as I started the capsule Camzyos 5 mg all my shortness of breath is gone. I can walk now almost normal and no side effects with that medicine. It works really well on me.

I hope your Cardiologist is "Camzyos Certified" so he may be able to talk to you about that medicine with the potential risks and great benefits it offers for your heart problems yo described above.

alyssa6203 | @alyssa6203 | Dec 1, 2024

I was in a similar position. I have HCM and had to use a wheel chair for months because I couldn’t get around without my heart rate skyrocketing and getting extremely short of breath. I had a septal myectomy done but maybe you can ask your doctor about Camzyos (mavacamten). This medication is new in the first one in its drug class. Ask your doctor if you are eligible (your EF, ejection fraction, needs to be a certain point for you to be able to be on the medication. Usually it’s 50% or greater but ask your doctor)

herbiej2 | @herbiej2 | Jan 4 3:55pm

64-year-old male HCM, 4-month post 2 vessel cabg, septal myectomy, ant&post maze, and appendage removal. Now Systole and diastole heart failure with wide LBBB. No longer obstructive after surgery. Multiple comorbidities, including, paranoid schizophrenia, parkinsons, osteoarthritis, stunned or frozen bladder, need to cath, frequent UTI's. Surgery was Sept. 12th, has been back to hospital at least 8 times. 5 different cardiology specialist's(team). The heart failure team, states he is not a transplant candidate. He will have to live with shortness of breath. Considering a second opinion. Cleveland Clinic is 4 hours away. Mayo is 8 hrs away. Bottom line , shortness of breath and cold seats continues. Any thoughts or help?

hncm | @hncm | Jan 30 10:44am

In reply to @lakeview "I am skeptical about taking camzyos, they can cause heart failure" + (show)

When we have HCM, our hearts are gradually "failing". 24-7-365! We are all going through constant and various stages of "heart failure" and heart failure is not just "end-of -life" heart failure. So how do you want to spend the rest of your life with your failing heart? To me the big question is, how much of my children's inheritance do I want to spend on Camzyos in order to improve the quality of what's left of my own life? It's a touch choice.

lakeview | @lakeview | Jan 30 11:39am

In reply to @hncm "When we have HCM, our hearts are gradually "failing". 24-7-365! We are all going through constant..." + (show)

I am looking for other options rather than taking Camzyos for shortness of breath

brumasterj | @brumasterj | Feb 5 8:34am

Hi sorry to hear your struggles?
Is you HCM obstructive?
I know when i got diagnosed my HCM had severe Obstuction, the said if i was in my 70’s or 80’s they would do alcohol ablasion but because im 57 and active they highly recommended septal myectomy, they did put me on camzyos to get me to feeling better! That is a miracle drug! Im doing things i havent felt good at in years, i still have the obstruction just not severe any longer so surgery is still being planned.
Good luck and may God help your doctor in finding the right procedure to get yku better!