HCM-ers: Introduce yourself or just say hi

@karukgirl
I should clarify, this is my second battery , my first ICD was after the SCA in 2012. I had not experienced any symptoms at all prior to the SCA, so it was extremely scary, especially for my family since I don’t remember anything about it. I haven’t read many posts yet but intend to. Besides experiencing some inappropriate shocks, I’m doing great!

@jklstone , ahh, okay. Thank you for clarifying that.
Glad to hear you are doing so well and glad you shared your information. You never know who may be helped by what you shared!

@jklstone I agree with Debra that it's so helpful to others to share your story. If you have 100 people, there would be 100 very unique stories. Those SCA are sneaky, I had a couple of syncope, no memories of them, just regained consciousness, before I received my ICD 3+ years ago. So glad we are able to benefit from this life-saving technology. Looking forward to reading your story!

@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!

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

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.

@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.

@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!

@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 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?