Went From Obstuctive Hypertrophic Cardiomyopathy To Apical Septical My

Posted by Dianna @holly1275, Jun 20 11:54pm

Hi I thought I would share my story.
I was dignosed two years ago with OHCM, and tried all the cardiac medication including Camzyos, and nothing worked.
I was faced with decision to have surgery and decided that was the best route to take.
I had the surgery Septical Myectomy, and it was a blessing for the first three months starting feeling great. As time went on by April I started having those same sick feelings again dizzy, heart racing, feeling dizzy and pain in my chest.
Had Echo seven months after my surgery and it reappeared it had returned
I was devastated didn't know what to do.
Unfortunately insurance has been my biggest concern, it doesn't cover Mayo, so I half to rely on my insurance in my home state.
I did go to the Hospital that has a Title of Excellence when it comes to Hypertrophic Cardiomyopathy, but I was told to try mediction I can't take and was told they didn't do redos and I would half to go to Mayo for that my insurance doesn't cover it, even my new insurance doesn't.
Well then I had to have a ICD placement and just recently went to the emergency room three weeks ago and they did another ECHO to find out it was in the Apex Apical Intercavitary Gradient .
Well shocked again knew it came back but not Apical, I've been trying to get more medical information but I am struggling.
I wish I have had better insurance to cover Mayo or even Cleveland Clinic but it isn't going to happen. I can only say to anyone thinking of surgery if your insurance covers Mayo please go and have a a hospital of Excellence do your surgery.
I can only fight for hope that this just goes away but we all no it doesn't.
I can't even take the new medication Afercamtin so sad when we can't even go to a hospital that can save your life because your insurance doesn't cover it.

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

Linda, Volunteer Mentor | @walkinggirl | Jun 21 4:41pm

Thank you for sharing your story. I am sorry that you are in a place where you feel like there is nowhere to turn and to take a next step. Dealing with insurance is one of the hardest and shameful things we all face in this country. I will not get political here.... The Hypertrophic Cardiomyopathy Association 4hcm.org may be able to help you get the care you need, and you most certainly deserve the best. I suggest that you go to that website and set up and intake appointment (done by Zoom or on the phone when you have your appointment). I do think that the designation of COE (Center of Excellence) needs further clarification. While the designation of COE for HCM does mean there are true experts in treating this horrible disease and have shown good results, I do wonder how many septal myectomies they have performed. You are so correct about the best places are those that do many, many of them, the reason I traveled to Mayo from Upstate NY. Please do contact the 4hcm.org, they have ways to help people. Keep us posted!

Linda, Volunteer Mentor | @walkinggirl | Jun 22 2:07pm

I was rereading your post, Dianna, and I am wondering about "just recently went to the emergency room three weeks ago and they did another ECHO to find out it was in the Apex Apical Intercavitary Gradient.
Well shocked again knew it came back but not Apical...." Am I reading your explanation correctly that the ER medical professionals could not definitively diagnosis the Echo findings? Was there an experienced HCM cardiologist looking at your echo results? What next step will you be taking to enhance your care at home? May I again strongly suggest that you contact 4HCM.org (Hypertrophic Cardiomyopathy Association), there are medical professionals who do the intake interviews (Zoom or phone) and help people. Here is an extra ((HUG)) to you.

doctorboo1 | @doctorboo1 | 2 days ago

So sorry to hear of your dilemma. I have the same problem regarding insurance trying to get into Mayo's. Fortunately I am taking Camzyos and it is helping for now. Will see. Maybe I can make it until December to change my provider. I did find my insurance would cover visits to University of Texas Southwestern Medical School in Dallas, the COE in this area. The specialist i met there was excellent. I don't know where you live, but it may be worth the trip. Best of luck addressing the issues you are facing. Please keep us pisted.