HCM-ers: Introduce yourself or just say hi

@joeymopete Mayo was also the place where my DNA was tested, Lauren was my contact genetic counselor. I am glad to read that you received more specific information about retesting, I did not. Please let us know if they initiate contact when more genes are known and people can be rescreened. BTW, I am an amateur genealogist, too! Thank you for the information.

Wondering about nonsustained vtach. Just diagnosed. Anyone have this or have had treatment? I’ve read about icd and ablation. Rather uneasy about this but could explain severe fatigue and shortness of breath.

@lakehappy Welcome to this group! Vtach - Ventricular Tachycardia - is discussed here: https://www.mayoclinic.org/diseases-conditions/ventricular-tachycardia/symptoms-causes/syc-20355138. About 2-3 weeks after my septal myectomy, I developed dizziness and giddiness which was eventually diagnosed as arrhythmia, do not know if it was labeled Vtach. I acquired Buddy, my ICD, problem solved. Have you been diagnosed with HCM? Are you under care at a COE (Center of Excellence)? Have you an electrophysiologist (a cardiologist who specializes in the electrical functioning of hearts)? Please do follow up and please keep us updated as you progress along this heart journey.

@walkinggirl thanks yes I have HOCM was diagnosed in 2015. Started Camzyos in 2023. Have had afib and had ablation. Also have COPD. Recently breathing quickly became worse and exhaustion set in. Wore a monitor and that’s when the vtach showed up.
I’m worried about getting zapped by an icd.
I’m being referred to a electro doctor,
I’m not at a Center for Excellence but am with a great cardio team with expertise with HOCM

@lakehappy Oh, yes, I too, am worried about getting zapped by Buddy, my ICD! It has not happened, that's not to say it never will. I think that those who have are grateful an ICD was there at their time of need. You are right on top of everything with a referral to an electrophysiologist and that you have a "great cardio team with expertise with HOCM." There are many excellent providers, mine included, who are not associated with a COE, but trained at a place that is now a COE. I hope your electro doctor appointment is in the near future - please reach out as you move along in your journey.

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.

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

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

@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?

@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?