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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 26 9:56am | Replies (870)Comment receiving replies
Hi Janet- I understand what you are going through. I am 70 now (my HCM was diagnosed when I was 65) and I had originally gone to Mayo for an evaluation in the spring of 2019, was told my HOCM was stable and come back in 5 years. I then had the opportunity to have a consultation at Cleveland Clinic in November 2019, was told things were still ok, come back in 6 months for a follow up, modify my lifestyle, continue on my medications, and things looked stable. Well that changed dramatically and things got much more involved quickly and I became more symptomatic by January 2020 so I went back to CC to get checked out in early Feb 2020. That led me to have a septal myectomy at the end of February 2020 at CC due to the severe obstruction. What I learned is that things can change very quickly from being controlled to needing more involved treatment. This is serious condition that needs attention and proper follow up. It is important to be your own advocate and be pro-active and mindful with your health. It is a long road to recovery but is well worth it. My main issue now is controlling my blood pressure which has been challenging and has meant lots of medications and lifestyle changes. Remember that everyone is very different with HOCM. FYI I went to Cleveland because it is more convenient for us (we live in southern Indiana) and have family and friends there which is a big help. Mayo is an amazing place for heart care.
Keep in touch, take care and good luck.
Barb
Replies to "Hi Janet- I understand what you are going through. I am 70 now (my HCM was..."
Hi Barb, thanks for your reply and story! I'm sorry to hear though you are having troubles with your blood pressure - hopefully you will find a solution. I had an ICD implanted at the time I was admitted to the hospital and while I wasn't on any medications, I am now on several and I do not tolerate medicines very well and have had several changes over the last 3 months and very possibly will have several more. I understand the seriousness of my condition and have been my own advocate for the last 7 years. I read way too much, keep excellent records of my visits, always have a list of questions and keep digging or asking until I get answers! I was scheduled for my septal myectomy last month until they discovered the antiplatelet issue and the potential risk of blood clots with having to go off Brilinta for several days. I am very impressed with the Mayo Clinic staff so far and am looking forward to this surgery in the hopes that I can live and not just exist. Thanks again for responding! I appreciate it! You take care as well and I'm sure you will be hearing "the rest of the story" in a few more months! Janet
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My husband was diagnosed with HCM at the age of 43, he checked in regularly with a cardiologist and took the same meds for many years. We traveled adventurously and in 2017 climbed a volcano to visit the gorillas in Rwanda at 73. In March of 2018 he collapsed at home and had a defibrillator/pacemaker implanted, his HCM obstruction was now impacting his life, syncope often, to the point he was not allowed to go off by himself ( we live in the back country of San Diego. He had a septal myectomy at Mayo in Rochester on October 4 2018 and is back to normal ( whatever normal is) 2019 we took a month long vacation to India. We were thrilled with care he had at Mayo and the continuing care from a young cardiologist. Hope this helps