HCM-ers: Introduce yourself or just say hi

@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.

@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 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.

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.

@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.

@walkinggirl
I’m no expert but I am an amateur genealogist and I speak on DNA topics. Our DNA never changes so if they keep a record of it there would be no need to retest it. My assigned Geneticist said they would keep it on record and it would be used for research, this was at Mayo. I will see if I can reach her to clarify whether contact will be made, if our gene is identified.

@rebaheizer
I’m not sure if this question was addressed to me but my septum was 16mm and my gradient was 185>. Yikes!

@joeymopete I am glad that @mbi and @baystater101 had helpful tips related to cardio rehab and exercise. I was fortunate that my former employer's retirement insurance (nonprofit Medicare Advantage Plan) paid 100%, but around here it was a 6+ week wait for an opening. The gym I go to is owned by 2 former employees of one of the cardio rehab places. They were very helpful with starting me off (no heart monitors, though) until I went to cardio rehab for a very short time, it was unnecessary by then. The Y in my small city has all kinds of classes for specific ailments (Parkinsons, breast surgery recovery for example). May I suggest checking to see if there is another way to obtain supervised guidance? By the way, how will the genetic lab people know to retest your DNA? I was told to contact them in 5 years after 2022.

@bbisno Hello Barbara aka @bbisno and welcome to the HCM discussion blog! You have reached out to a like-hearted group where diagnosed members (and participating loved ones) are all at different stages of their HCM journey. You have probably learned much during the last 3 years. Did it take a long time for you to receive your diagnosis? People on this blog shared that they were misdiagnosed for years and others, like me, were fortunate that the cardiologist I was referred to was well-versed in HCM. Are you a patient at a COE (Center of Excellence) such as Mayo Clinic? Has your medication helped? Have you considered genetic testing to determine if the naughty gene can be identified?

My name is Barbara - I was diagnosed about 3 years ago - I take Meteprolol 125 mg a day- my main symptom is fatigue and shortness of breathe when going up steps.