HCM-ers: Introduce yourself or just say hi

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!

@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!

@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!

@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 welcome to Mayo Clinic Connect!
Wow...you must have been surprised you needed an ICD after being diagnosed 14 years ago!
And what a way to find out you have HCM... a cardiac arrest! How tremendously scary that must have been!
Were you doing okay and this suddenly came about, or have you been feeling like you knew something was wrong?
Have you had a chance to read the many posts here from members who also have ICDs living inside their chests?
@walkinggirl is walking around with her "buddy" and doing very well. She has experience with this.
You mention you just got yours, are you still healing? Have you been able to process this big, new event in your life?

@gingersnap69 , welcome! What a cute user name 🙂
You have come to the right place to share your thoughts and fears about not only just being diagnosed, but also waiting for an ICD.
I don't blame you for being terrified! I would be too.
HCM/HOCM (the unpleasant obstructive form of HCM) are life changing conditions.
There are many members here who have had to get ICDs implanted and are thriving, but still, this is you, and all this is new.
You must feel overwhelmed.
This sounds like it came as a surprise, but now that you know, looking back, are you able to put some pieces together? Symptoms that you felt, but didn't make sense?
Are you otherwise healthy and active?

Julie from Iowa here. Diagnosed in 2012 after sudden cardiac arrest. Just received my new ICD battery.

Lynne
Best to you with your HCM. I too have HOCM and an ICD. There are more people with this heart disease than we think. This is a hereditary disease so assure that your relatives are checked and have echocardiograms. Having an ICD is no problem.
Take Care
Jim

Hi, I'm Lynne and I'm a 56 year old woman diagnosed with HCM less than a week ago. Currently sat in a regional cardiac hospital awaiting implant of my ICD and a bit terrified about life after this major change.