HCM-ers: Introduce yourself or just say hi

I have a Cardiologist from Souix Falls I see, but I'm starting to think of getting a different Cardiologist, cause I just had to go to Court today cause I was sued by a Collection Agency that took over the collections from the bill I got from him. I just don't think he's worth seeing if I'm gonna end up going to court over it...we really can't afford that right now. And well I do live in Minnesota as well, but The Mayo Clinic is about a 4 hour drive from here. 🙁

Hi, Dave here. I am 56 and was diagnosed with HCM last year while dealing with A-Fib. Looking back now my doctors think my A-Fib (last year), High Blood Pressure (diagnosed 6 years ago), and mitral valve regurgitation (8 years ago) are all from the HCM. I was cardioverted last year to get back in rhythm but have continued with severe fatigue and pressure when doing activities. At my annual A-Fib check they did more testing (Echo, Stress, and MRI) and said my HCM has increased to being obstructive. I am scheduled next week (10/31) for pre-op and then a septal myectomy on 11/1. I am looking forward to feeling better (not relishing the thought of surgery) but this site has helped me to hear the results many of you have received. Thanks for the encouragement and the updates! I plan to do my part as well going forward to help others facing this prospect. Dr. Schaff is my surgeon and I am very pleased with what I have read and heard from all of you regarding the good care at Mayo. Thanks, Dave.

I am so lucky to have the University Of Iowa Hospital and Clinics just 30 minutes away from me. I have had a wonderful cardiologist and now a genetic cardiologist who has taken over my care.

And I still live some distance from my local HCM cardiologist as well. About 2 hours away. I did find a cardiologist in my town who is familiar with the disease and is open to working with my HCM doctor. He is the doctor I will see if something urgent comes up. I find all this to be so complex sometimes, but really lucky to have access to good care.

Exactly. I feel very fortunate to live 1.5 hours away from Mayo and I have been able to make them my primary cardiologists. For me, sadly, I am trying to find insurance that will cover Mayo in-network and, despite living in Minnesota, no one offers an individual policy with Mayo as in-network THanks for nothing, Blue Cross (who pulled out of the individual market here.)

One more thing I wanted to mention - many of us here (including my neighbors here in Southern California @mbcube and @1949 (Tillie)) live some distance away from Mayo. We all have local physicians here in our home area and travel to Mayo periodically, or as needed. Marc (@mbcube) and I both had myectomy surgery there some years ago while Tillie is on her way there in a few months for her myectomy.

It is not unusual for people with HCM to have an expert who they travel to see when they get into trouble, and a local doc who helps them manage the day to day.

Many of us don't have someone like Dr. Tajik (who used to be at Mayo) living nearby like @onewholovesrock, so we must travel to consult with the Mayo docs who have such a wealth of HCM experience.

Thanks for the invite. I was diagnosed with HCM in 2010 after a cardiac arrest. I moved my care to Mayo in 2014 and have been managed very well ever since. I have a strong family history of HCM and was misdiagnosed with asthma for 23 years. I don't have asthma. 😉

Hi, I'm Tillie from California. Thank you for adding me. I found out in 2011 that my brother had HOCM. I was asymptomatic at that time and was told by a local cardiologist that I didn't have it and never would. I then became symptomatic two years ago and was lucky to find a knowledgeable HCM cardiologist. In June of this year, my cardiologist recommended that it was time for a myectomy. I am scheduled to have one on December 30 at the Rochester's Mayo.

@cynaburst Yah I'm going to try & listen in on it if I can. I'm looking forward to it. I signed up for it.

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