HCM-ers: Introduce yourself or just say hi

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.

Hi! I am female, 85 years old, and have just been diagnosed with HCM.
I hope to be able to learn more from this group.
marvalde5

@gingersnap69 I am joining Jim and Debra in welcoming you, Lynne, to the HCM discussion group! I was about your age when HCM was discovered - heart murmur heard for the first time. My dad quite certainly had it and I am guessing his mom did, too. To receive an ICD, you may have been experiencing irregular heart rhythms and/or other symptoms. I have a cardiologist well versed in HCM, many people go to a COE (Center of Excellence) and I have an electrophysiologist who monitors Buddy, my ICD. Please never forget that all of us have been in your shoes at the first step of "diagnosed with HCM" and here we are telling our tales. We cannot answer specific medical questions or give medical advice, but we can point you to information and share experiences about our big hearts. May I suggest reading about both HCM and ICD on the Mayo Clinic website to start finding out as much as you can? (I'd copy the links but I am not at home with my computer mouse.) Please prepare lists of questions for your health providers. Has your care team recommended medications? Again, welcome!