Can OHCM be repaired ?

Posted by melton1918 @melton1918, Oct 11 12:42pm

Diagnosed 3 yrs ago, have been on meds, Verapamil, and lasix help the most . I also take Spironolactone,Metoprolol Tartrate.

I don’t have enough energy to do more than take a shower. Cleaning,cooking,my spouse takes care of those. When I travel, I go by car so I can stop as needed, I have swelling of my legs,feet it takes at least a day or two to go back down. The car trips are about two to threes hours per stop , a total of 9-10 hours.

My Cardiologist says that normal and , surgery wouldn’t help ?

I’m 68 yrs old,have a BMI of 43, , also have, spinal stenosis and torn meniscus in both knees. Any help,comments will be appreciated .

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

Linda, Volunteer Mentor | @walkinggirl | Oct 12 11:52am

@melton1918 I see that you are questioning the statement by your doctor regarding your OHCM, that it cannot be repaired. Is your doctor well-trained in HCM? We cannot give medical advice here on Connect but do think about seeking another opinion. You have many medical issues which, (as my doctors say), make you a "complicated patient." Are you treated at a COE (Center of Excellence)? That is very important because the medical people there have much experience treating people with all kinds of HCM and those who also have other medical issues. May I suggest you contact the Hypertrophic Cardiomyopathy Association 4hcm.org and do an intake interview with them. Their specialty is helping people seek the best possible care.

brumasterj | @brumasterj | Oct 13 12:00pm

Very interested in hearing if you are receiving care at COE!
I believe many of us on this site had OHCM and was able to pursue options such as medicine (camzyos), ablasion, or septal myectomy!
These would be great conversations for your care team and if they are not well versed in HCM ask for a referral
To a high volume center of excellence