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HCM with no options for medication for relief of symptoms
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 28 7:46am | Replies (36)Comment receiving replies
Thank you so much for replying! It helps to not feel so isolated. It am a few months shy of having been diagnosed 2 years ago. I feel like I have had literally every type of xray, echo, mri, etc. that is out there. I will go back for labs and testing in July. I had hoped to be a part of a clinical trial for a new drug, but I guess it takes a while to get those up and running. All of my first degree relatives have been tested for free and are awaiting results. One of my daughters came back negative, but I am worried about my other daughter because her echo showed some borderline thickening.
Do you mind sharing more of your story and what has worked for you?
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You have had a lot happen in a short amount of time @rmhc123 , Wow.
I felt so alone too, until I found Mayo Connect. I had never heard of hypertrophic cardiomyopathy. I could barely spell it! I didn't know anyone with it, and that left me feeling just as you said...isolated. I couldn't believe it when I hit 'reply' on my first post and someone got back to me right away. Thank goodness there were other people out there with this dumb disease too!
What worked for me was open heart surgery and a septal myectomy. All the different drugs I was on did nothing. Nothing at all. I just kept getting worse. HCM was not taking my life, but it was taking what I loved in life away from me. I love to hike, walk, dance, do yoga, and I was not longer able to enjoy them. I could barely do laundry anymore.
I felt so depressed.
And I was scared too. It felt like I may die at any time. It was not until I made the trip to the Mayo Clinic in Rochester I finally knew I had found where I needed to be. I did not like hearing I needed open heart surgery. No. I did not like that at all. But after the shock of hearing I needed open heart surgery dissipated a little bit, I prayed a lot and actually had some peace. I did not want to live with the symptoms I had and wanted a chance to get back some of my life. It has been three years and I am walking my usual 6 miles everyday and have very few symptoms anymore. Sometimes I even forget I have HCM. I no longer take anything but a baby aspirin.
I know you said you have seen two doctors, and you feel confident with what you have been told. Have you considered perhaps a third opinion? Mayo Clinic was my third stop and it made all the difference for me. They are the BEST in the world in treating HCM. They are experts in septal myectomy surgery, if that is the course decided. I was seen in consultation at Cedars-Sinai in California (l live in far Northern California--we like to distinguish ourselves 🙂 ) I had my diagnosis confirmed there, and again at Mayo but the Mayo Clinic had a different approach and I sometimes wonder if I had not gone to Mayo, if I would be on Camzyos hoping it gave me back my life. I don't want to take medications the rest of my life, and the septal myectomy is the cure for the obstruction. HCM will be with us forever, but having no obstruction, no side effects from medication is liberating!
In the meantime, while you wait for the genetic testing results for your family, is there a favorite hobby or activity you can do that helps your tortured mind relax?