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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 20 hours ago | Replies (1049)Comment receiving replies
Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart murmur for the first time a year ago. He ordered an echo for me in order to rule out anything serious going on. Unfortunately, it showed I had HCM, so I was referred to a cardiologist. He started me on Metoprolol 25 mg, which was later doubled to 50 mg. I haven't noticed any changes (good or bad) with my symptoms, yet. In a way, I was happy to know there was a reason I was having periods of breathlessness once in a while and increased tiredness.
I'm a vegetarian, so I eat a fairly healthy diet, other than I do eat and drink some dairy. I drink 1–2 quarts of water a day, and some coffee every morning. In addition to the echo, I also had a cardiac MRI, which confirmed my HMC. I was riding my exercise bike 20 minutes, 5–6 times a week ... until I couldn't. I'm a former smoker of 1/2 pack a day for 30 years until 2017.
Over the past year, my episodes of breathlessness have become more severe, and they happen more often. I now go through periods of gasping for air for 30–45 minutes, with dizziness, and my pulse rate jumps up to 100+. Nothing helps when that happens, other than lying flat on my back. (Is that weird?) Supplemental oxygen doesn't help, nor does sitting. That is followed by an hour or two of dizziness and shaking like a leaf.
My mother died from cardiac arrest when she was 54, and I am the only person still alive in my family.
My cardiologist also recommended I see a doctor three hours from me to find out if I would qualify for the mavacamten study. Unfortunately, I don't have transportation, and there aren't any shuttles between where I live and the hospital three hours from me. I'm still trying to work something out, though. If I can get that figured out, then I can see if my insurances will cover much of the $87,000 the prescription costs per year. (gasp) There isn't a Mayo Clinic in the state where I live.
I think that covers everything.
Replies to "Hello, my name is Valleri. I'm 73 years old. My GP heard I had a heart..."
Valleri: Read my posts made over the past 3 years as they might be helpful and encouraging to you. AND, go to 4hcm.org for great info and call them as they may have some ideas regarding closer treatment centers and transportation grants/arrangements. Maybe Uber or volunteers, etc. Well worth you time.
Prayers for a great blessing!
Hi Valerie. I’m Deborah - was diagnosed two years ago with HOCM (obstructive hcm). I’ve been on Camzyos for almost two years. The drug eliminated the obstruction, which is great, but I’m still out of breath upon exertion
Re: the cost of Camzyos, if you’re on Medicare you only pay $2000 at the beginning of each years. After that, nothing until the following year
Hope you find a way to get to a cardiologist who can put you on the drug. Good luck
Connect
Hello @valleri , and welcome to Mayo Clinic Connect.
Wow, it sure sounds like this came on rather quickly. I'm glad your doctor thought to do and echo and further confirm with the cardiac MRI.
I'd like to welcome you to the HCM Club...but it's a club none of us wanted to join!
I posted a couple of Camzyos sites online. I confess I am not familiar with how it works, as I had a septal myectomy for my HOCM.
https://www.camzyosrems.com
https://www.camzyos.com/
You mention you have no transportation and would have a hard time getting to the hospital recommended, which is three hours away...do you have a friend or neighbor who would be willing to take you?
Your symptoms sound like they have progressed quite a bit, and I bet that concerns you greatly. I would me for sure!
I am also posting a link to another discussion here on Connect in the Camzyos group. Fellow member @manuelpo has been very helpful with information. Read his post here:
https://connect.mayoclinic.org/comment/1370280/
And if you are not tired of reading yet, if you type in Camzyos in the search area at the very top of the screen, it will take you to the 1000's of discussion regarding Camzyos.
You stated you are 73, which seems young to me! So I am assuming (bad idea) that you are on Medicare? Has anyone tried to check your Part D for you? Or have you tried?