HCM-ers: Introduce yourself or just say hi

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.

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!

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?

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

@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.

@jbogema The thickening is exactly what happened with me and many others! Are you a patient at a COE? I think your cardiologist explained it well since you are telling the situation in very easy to understand language. One day and step at a time, you have an encouraging bunch of people with you on this - you are following footsteps. How long do you think it will take for you to find out about Camzyos?

@walkinggirl thank you! I developed a heart murmur in 2019, and an irregular heartbeat. My doctor said it was getting worse and I saw a cardiologist who did a number of tests. He said the heart wall was thickening, pushing the valve out of place, and blood was backing up. I noticed fatigue and increased asthma symptoms. If I can’t get Camzyos, it may mean surgery to shave the heart.

@jbogema Welcome! It sounds like you are going to use Camzyos. Neither Debra, my fellow HCM mentor, nor I have been prescribed that, but many others have. When did you begin experiencing symptoms? Are you a patient at a COE? We are looking forward to your comments. Welcome, again!

@marvalde5 Welcome! At age 85, I will bet we can learn much from you, too! What symptoms are affecting you now? How long have you had them? Are you under the care of a HCM specialist? At a COE? Again, welcome and we are looking forward to your comments.

Hi, my name is Jani. I’m 67 years old and have just been diagnosed. I’m waiting for patient assistance from Bristol-Squibb-Meyers.