HCM-ers: Introduce yourself or just say hi

I am being treated by Dr Anjali Tiku Owens she specializes in Hypertrophic cardiomyopathyI have had all the studies Holter 48 and 21 day MRI of the heart Sterss echo and so on She did recommend a Difib 4 months ago but like all men I drug my feet and never did it However I did see a Doc that does the procedure and he agreed.I am having a Holter 48 hr and a stress echo next week and compare to the ones I had 15 months ago She did tell me the that the blood vessels needed to be in the right place for me to be a candidate for ASA.I was referred to Dr Owens by my former Cardiologist as he was by his own admission not conferable treating me This was about 4 years ago My Doctors age at the University of Pa After the studies she is going to see if I have any more room to increase my verapamil i take 180 mg 1 time a day I am maxed out on metoprolol I take 2 100mg a day Thank you for taking the time to respond to my post

Angelo - An AICD at your age is not a big deal. But I wonder why now and not 4 years ago? New Doc? Did you have a Holter or other test/device that monitors your heart that showed issues? As for the ASA (alcohol septal ablation). Its not always as simple - as you have to have just the right anatomy for it to work. Many interventional cardiologist (the standard kind) prefer to do these, but if they are not expert HCM doctors, It may not be as effective as it should be (but they will rarely admit to this). If you are not being seen at a HCM Center of Excellence, its worth the effort. There, they look at what will work best for you (either a Myectomy or ASA).

Angelo
Have been being treated for HCM for about 4 years My Doctors are at the University of Pa Iam at this point maxed out on meds Docs are considering the alcohol ablation I will be following the discussions

I have an appt this afternoon and will reply as soon as possible.

Thanks, Mark

Angelo 69 YO have been being treated with meds for about 4 years Iam at the point where doctor is wanting a difib and pacemaker.Then talk about AIB

@ronaldpetrovich please see my note in this thread about coming to Mayo.

@tkterrell just a note of reassurance. I’m 62 and had symptoms in third grade when i was 8 years old and kept getting short of breath on the playground. You will learn to adjust, your body will support you and there are treatment options being tested and developed all the time. I self-referred myself to Mayo in Rochester. 10 years ago became they specialize in HCM diagnosis and treatment. I go every few years to monitor the status of my condition. Good luck. Let me know if I can be a sounding board for you. I is shocking and scary at first and seeing that others live a normal life will help. Gwen

Hi Ronald. I have HCM, diagnosed 30 years ago, symptoms started as a child but no one knew what was wrong. I’m coming to Mayo Rochester April 2-5. I’d enjoy a chance to meet you and hear about your experience. I’m also a writer and want to get more involved on social media. I have open time on Wednesday April 4 for lunch or available all afternoon. Could we meet? Thanks Gwen

Hello ,my name is pinaki Sankar and I am from India and diagnosed with hcm unobstructive 4months ago. I am 45yrs old. I heartily wish you.

Hello. My name is Sundy and I am 33 years from Miami, Fl. I was diagnosed with HCM 5 months ago. I gain 30 lbs in 3 month and could lose weight. I went to a weight loss doctor and he did a ekg. He told me I had an acute MI. I went to a cardiologist who had me get a cardiac cath. They notice my heart was enlarged. They put me on medication that have made feel normal again. I am happy I know what my diagnoses is. I happy to be part of this group.