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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. My name is Angelia. I was diagnosed in Feb. 2020 with HOCM after landing in the hospital for uncontrolled blood pressure, heart rate, heart murmur. Up to being diagnosed nothing stopped me with my favorite hobby, remodeling my house. Wood floors, putting in kitchen sinks, tearing down walls. Yea, nothing stopped me. Took awhile, and multiple trips to the Ed to get the HOCM diagnosis, and then in March tacked on dx of A- fib. On Cardizem 360 mg, Metoprolol 100 mg twice a day and now Xarelto. Referred to Mayo Clinic by my cardiologist and Mayo Dr controlling my BP meds. Symptoms keep getting worse and now appears Septum myectomy will be the solution/treatment. Hello to everyone. I'm scared, want my life back, and feel alone with my symptoms. Could someone share with me the symptoms you experience with HOCM. Are meds helping with symptoms? Meds not helping? Would appreciate your feedback. Thanks.
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Hi Angelia,
Welcome. You will find a lot of answers to your questions here, you just need to poke around a little. There is something comforting knowing you are not alone in your new diagnosis. It must feel frustrating to be such an active person, doing all the remodeling you've done, going from there to hearing you may need a septal myectomy! Fear is a normal response to hearing this, so you are not feeling anything abnormal there. I felt compelled to respond to you after I read your words "I'm scared, want my life back and feel alone with my symptoms." I would venture a guess all of us with HOCM feel just like you do! You ask for someone to share their symptoms, medications, and what if anything is helping.
Each person is unique and no two are alike, we all know that, but that being said, there are a lot of similarities we share in this diagnosis too. Short of breath with minimal exertion. Chest pain. Unable to do what used to be easy. Irregular heart rhythms. Increased symptoms after a large or high carb meal. The list is extensive.
I can share with you that I too was recently diagnosed at the Mayo Clinic in November 2019. I live in far Northern California in an area of incredible beauty. I'm a big time hiker. Lassen, Shasta, Whiskeytown. I walked 7 miles a day, hiked every week. And then I couldn't anymore. Something was wrong. I was misdiagnosed for several years. Until being my own advocate and finding my way to the Mayo. I was numb hearing the cardiologist tell me I needed a septal myectomy. I sent me off right then to Dr. Bagameri, the surgeon. He confirmed. Shocking! I was scheduled on March 20, 2020 to undergo this surgery, but alas, the Global Pandemic shut down the world and I had to postpone. I am now on for July 8. I asked the group for tips on getting thru such a brutal surgery and got so many wonderful responses. So for you the same is true. There is a lot of information here. You just need to search for it. The moderators are wonderful. They can guide you around and help you. You are on a journey you didn't see coming...and information is power. Learn all you can about this condition, listen to your doctors. Eat healthy and stay as active as you can. Covid 19 is not your friend, so take extra precautions out in the community. You are not alone. Your fear is normal, and with information comes power. For some, medication works. For others, it doesn't. Medication does not cure this, it controls symptoms. The Mayo Clinic is world famous for a reason. They are the best. Their opinion should be considered. But as is always the case, the decision is yours and yours alone to make. It isn't something to take lightly. I will be praying for you and wish you the best. Stay strong. Best regards.