HCM-ers: Introduce yourself or just say hi

@walkinggirl I’m not at COE. I’m seeing a cardiologist in Bloomfield, MI. It’s one week at a time with Camzyos, since Blue Cross refused to cover it.

Hi. I've waited 6 years for a diagnosis, as my symptoms got worse and worse, in spite of many ED visits and cardiologists and tests. I have finally found a cardiologist who used the right tests and diagnosed me with HOCM. I was very disabled by then and saw my condition was noted as "severe HOCM" in one of the referral forms. I started mavacamten 2 weeks ago, and I am already seeing small gains. A long way to go, but I am hopeful

Hello @pamela47, and welcome to Mayo Clinic Connect!
I'm so glad you found this online community.
What a crazy story you have! How fortunate you now know what you have, but how frustrating it must have been to finally get the diagnosis and treatment.
I can identify with you, as my story is similar. I was misdiagnosed with four or five different heart conditions over about five years. By the time I got my third opinion at the Mayo Clinic, my heart was failing and I was told I needed open heart surgery! I too had severe LVOT obstruction and fell through the cracks in my local town.
I'm glad the Camzyos is helping you. Have you had a chance to read any of the Camzyos group's stories? Here is a link to those brave folks:
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Are you being seen by a cardiologist who is well trained in HOCM (Hypertrophic Obstructive Cardiomyopathy)?
Have you had a second opinion?

Thanks@karukgirl.
Yes I've been reading stories here during the last few weeks. It's amazing to find that my symptoms are not just mine, and things I had to work out by myself (like the link between temperature and humidity, and my symptoms) are n9t just "mine"
I wasn't so much as misdiagnosed, rather several diagnosed were excluded and I was left with nothing but "must be anxiety, must be indigestion". Meanwhile the number of heart drugs I was given were changed and increased. I think I was a victim of old cardiologists who saw only data on men's hearts when they trained, and also of hospital politics.
But I now have a cardiologist who is experienced in HCM/HOCM and live in a country that heavily subsidises my meds.
I'm so pleased to have found this group!

Hi,
I am 79 and have recently been diagnosed with HCM and waiting to begin taking Aficamten. I’m concerned about side effects and costs. I’d appreciate knowing what other’s have experienced.

@carolinca Welcome to Connect and the big hearted HCM group in particular! With your recent diagnosis, you may have many questions and concerns. Your 2 specific questions at this time are great starting points. I have never taken Camzyos, I cannot address your concerns but would like you to look at some of the Camzyos threads under discussion. I am not at home with my computer mouse so that I can copy and paste the links for you. Please, in your browser, please type Mayo Clinic Connect Camyzos side effects and then when you have finished looking over comments, type Mayo Clinic Connect Camzyos cost. How did your doctor determine you had HCM? How long have you been experiencing symptoms? Again, welcome to this discussion.

Hi my name is Dawn and I'm 57. I was diagnosed with OHCM. My cardiologist gave me informational pamphlets on 2 meds, one being Camzyos and the other Myqorzo. Has anyone taken the newer med Myqorzo? These meds are scary to me. Then he also mentioned surgery, which is also scary. Any input would greatly be appreciated.

Hi Dawn,

There's lots of information on this site and lots more on the internet, including at https://www.4hcm.org/, but the most important thing on which I think almost everyone agrees is to be seen at a Center of Excellence (COE) by a cardiology team with lots of experience in treating this condition. Also, lay people (like me) can only report their personal experiences, but you really need to find an experienced doctor/team that you trust. Everyone's experience with medications and surgery is unique, even when their symptoms or numbers might be the same or similar. That's why it's important to get advice from professionals who have seen hundreds/thousands of patients with all kinds of constellations of symptoms and morphology, and who can give truly informed advice about how best to proceed in your very particular situation. And if it's a close call, or you don't have complete confidence in your team, by all means get a second opinion if you can.

With all those caveats, for what it’s worth, I could have tried Camzyos (Myqorzo hadn't yet been approved), but instead decided to have a myectomy. My thinking: I had a mechanical problem and the surgery offered a lifelong mechanical solution. I had access to a COE and a very experienced surgeon who had done 1,500+ myectomies over decades. I'm 60-ish, and if I had been significantly younger, I would have more seriously considered trying medication (because I would have had more years to try and still be able to have the surgery while young and strong, and still enjoy a higher quality of life thereafter. If I had been significantly older, I would have tried medication to avoid the trauma of surgery. And if I didn’t have access to an experienced surgeon at a COE, I would have tried medication. It seemed to me that I was in the sweet spot for going straight to surgery, especially given that I wanted to have an active lifestyle. (Of course, one can rationalize these decisions lots of ways.)

I had the surgery in September. I have not experienced a moment of inappropriate breathlessness nor felt faint once since then. After a 9-week recovery, I have felt normal and beginning in January I rejoined my small group fitness classes to recover strength lost from a 6-month hiatus.

I will say that there were times in the first nine weeks when I questioned my decision, but with each passing day since, I’m increasingly confident that I made the right choice for me.

Hope this is helpful.

@dmtaylor, welcome to Mayo Clinic Connect.
I'm glad you found this online community. There are people just like you with your same concerns, wonders and questions.
The newer HOCM drug doesn't have many posts, but there is this thread:
https://connect.mayoclinic.org/discussion/myqorzo-has-anyone-tried-this-new-alternative-to-camzyos/
Open heart surgery is a frightening thought! I was terrified when I found out I needed it. I tried all sorts of ways to work around fixing my problem.
Wasn't a candidate for Camzyos, alcohol ablation, or minimally invasive surgery.
Dang it.
But I can share that once I embraced the idea, prayed about it, and accepted this was the right path, I never regretted it once. Yes, there were days that were painful, but any surgery has pain associated with it. But it was a one-and-done deal, and I do not have to take life-time medications. I got my life back!
It is a lot to process @dmtaylor, and your best actions are to learn as much as you can about what you have and what the treatment options are. Here is another link to HCM from the Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Is your cardiologist educated in treating HOCM?
When do you see your doctor again?

Just found out that I have HCM. I don't fully understand how dangerous it must be because if I'm 68 and lived with it most of my life, then I must not have a serious problem? At least that's what I'm going with for now.

I have been prescribed 50mg of Metaprolol Succinate which I take at bedtime. My cardiologist says that it will slow down my heart rate. It may lower my blood pressure, but all my life I've always been at 120/80 all the time, never experienced high blood pressure. I have taken no medications all my life before this prescription.

Just wondering what's next? I have done the stress test (passed, barely) and it was the transthoracic Echo that led to the diagnosis. Going in for an MRI in a week or so. Looking for information about potential treatments, if any, to stave off a heart attack. And what this means for my quality of life as I head into my Golden Years.