Looking for advice

Posted by promisesofhope77 @promisesofhope77, Sep 26 8:58am

I’m 54 and newly diagnosed with obstructive HCM. I had an AFib incident in February and due to the high Troponin levels the ER sent me to the hospital suspecting a heart attack. Instead, it turned out to be HCM. I had been largely asymptomatic except when exercising, when my heart would flutter, I’d be breathless, and experience angina. I thought I was just unfit. I started out on metoprolol 25 mg. We couldn’t go higher because I also have bradycardia. I’ve looked at mavacamten but I’m concerned about starting it because of my existing AFib (I’ve now had several episodes) and my Ejection Fraction which is 59%. I’ve also looked at aficamten and even considered joining the new Edgewise 7500 trial when it opens. My company is self insured, so even though we have Aetna insurance, a large cost could come back to my organization. However, the angina and occasional light headedness is getting worse and my latest TTE shows a high LVOT gradient at rest and severe SAM and mitral valve regurgitation. My pragmatic (and phlegmatic) side wants to wait but my anxious side is ready to try the new medication. I’m just wondering if this means being on medication for life and whether that’s worth it for some symptom resolution.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Sep 26 10:35am

Hello @promisesofhope77, and welcome to Mayo Clinic Connect.
I'm glad you found our little online community of HCM/HOCM people.
You are asking some questions I bet all of those who just found about they had this condition have asked.

You certainly sound symptomatic with your HCM, so no wonder you are anxious!
I would be too.
The thing is...only you get to decide what course of treatment to embark on. But before you do, you should educate yourself and get your hands on as much information as you can about this condition.
You will want to be as full of knowledge as you can so you can be your own best advocate.

Here are a couple of links to Mayo Clinic's Hypertrophic Cardiomyopathy and Cardiovascular Dept:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://www.mayoclinic.org/departments-centers/hypertrophic-cardiomyopathy-clinic/overview/ovc-20442502
And another organization, not affiliated with the Mayo Clinic, but a good resource for patients with HCM:
https://www.4hcm.org
Once you have learned about what you have living inside your heart and the various treatments available, you will be better able to make those choices.
Not one person is like another, we are all different, so there is not a one-size-fits-all approach to treating this obnoxious condition.
In my case, by the time I was finally diagnosed with what I really had, I had been treated for several years for things I did not have...and I needed open heart surgery.
Saying that, I would strongly advise you to be certain your treating cardiologist is up-to-date in the treatment of HCM and HOCM.
You want to be certain that they are following protocol that benefits you and that the testing and care you receive are top notch.
Are you close to a Center of Excellence (COE)?
Have you had a second or third opinion?

brumasterj | @brumasterj | 1 day ago

Cant say this enough but go to a center of excellence if you have not already!
I was diagnosed at 56 after years of being misdiagnosed and under diagnosed. I was very active runner, mountainbiker, hunting when it started showing its ugly face more and more and more severely and after the last two stays at the local hospital where one stay they said i pneumonia and the second stay the said i had heart failure and LVOTO my wife told me to call the mayo! Went to mayo
Severe LVOTO HCMO went on camyzyos to get me stronger for surgery for 5 months. Camzyos helped but it had restrictions it got me on my bike but i could not do hills because my heart would start regurgitating

Your at the right place to see how this has affected each of us in very similar ways but also in different ways

Good luck with all your decisions