HCM-ers: Introduce yourself or just say hi

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.

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.

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.

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?

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

Hi Balto lady.

I'm a 73 y.o. man who had a myectomy and mitral valve repair 7 weeks ago today.

You say you don't want a hospital bed, but what about an electric recliner? I got one just before surgery (lucked out on Craigslist for a brand new one at a bargain price), and I'm still sleeping in it. It is roomy and comfortable and inhibits my tendency to roll to my side. I did stuff small pillows next to my hips in the beginning to help keep me stable.

I've read here that some people use pillows in bed, so I expect someone who's done that will pist here, but I'm very happy with my choice (and it's not an unattractive addition to my living room).

Good luck with the surgery! While it is too early for me to know the extent of my long-term improvement of symptoms, I am optimistic, and I am up to walking 1.5 to 2 miles many days. I start cardio rehab soon, to see whether they have useful ideas and techniques to help me get more fully active again.

That’s a good idea. Hadn’t thought of a recliner. Has the myectomy helped with your pre-operative symptoms if you had these-shortness of breath, fatigue, dizziness or palpitations. When I stand up, I also feel sometimes like I don’t have good blood flow to my legs. It takes about 30 seconds to feel better. I already got a pacemaker last year.
Sounds like you are walking well! I’ll probably do cardiac rehab too. My surgeon says it’s up to me. Did you have any other surgery on your mitral valve at the same time. Thank you! Wishing you good improvement and good health!

Hello,
I’m a 72 year old retired woman diagnosed with HCM last fall following a pacemaker. One test led to another and I was diagnosed. I opted for a Myectomy and will have it done in a month. Will also have a repair or replacement of my mitral valve plus 1 vessel bypass. I’m worried if sitting up from lying to get out of bed or back in bed is a huge problem. I don’t want to put undue pressure on my chest incision. I usually sleep with one pillow on my back or right side. Do people get special pillows. I don’t really want a hospital bed. Also, looking for a front closure soft bra for support.
Thank you,
Baltimore lady