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HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
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I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
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HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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Hello @karindee, and welcome to Mayo Connect. You found a great place to share your story and learn about others too. Maybe this article from Mayo Clinic will be helpful?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
You have already got some responses, so let me add mine: the answer? It depends!
We are all different and each one may be affected by HCM in different ways. It all depends on your health status and how active you are now. In my case, being stubborn and not a very compliant person, I walked, hiked, danced, did yoga and rode my Harley as much as I could. Then as my HOCM progressed I was not able to do much of anything I truly enjoyed anymore and ended up at the Mayo Clinic, where I had open heart surgery (septal myectomy) nearly four years ago.
How long have you had symptoms of HCM? What is your cardiologist planning to do to treat you?
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1 ReactionYou are at higher risk of developing Afib. Look into the causes of it and modify your lifestyle accordingly.
Talk to your doctor about lifestyle changes. There are so many differences among people with HCM. When I was first diagnosed I was advised to "Keep on doing whatever you are doing." As the condition progressed, I slowed down and was monitored more closely. Good luck!
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1 ReactionYes, you may have to. Shortness of breath could be a factor. You may also need surgery such as alcohol septal ablation. Also family members will need to be tested by having an echocardiogram. If they are negative, then they need to be tested every 5 years. Also you could get cardiac amyloidosis (stiff heart syndrome) which is stiffening to the outside of your heart. Take your blood pressure everyday since your BP can be affected.
Best of luck to you!
Jim
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2 ReactionsHi,
Today I was diagnosed with HCM. Do I have to make any life style changes?
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1 Reactionit would be helpful to know how long your flights were.
nurses*
Thank you for your encouraging comments. i havd heard really great things about Camzyos too from the burses at Scripps where i go. one nurse’s husband died of HOCM before the medicine existed and she said from what she’s seen she would sell her house if she had to in order to get on it!
Before my septal myectomy, I was on a high dose (100 mg twice a day? - do not remember), of Verapamil for about 6 months. The side effect that bothered me the most was something that eating high fiber and drinking Metamucil did not help.
It sounds like you have a very full life in your current condition, so I understand that would make it hard for you to change your course of action midstream. For me, it would be about quality of life. If you feel strongly about keeping your schedule and traveling to teach, go for it! You seem to have found a way to be comfortable enough to pursue your passion. (You did mention having to use oxygen on long flights which seems limiting, but not impossible to manage) I did fly each month that I have been on Camzyos , felt great, and have never used oxygen. Camzyos will be here when you return. I do know that once you are approved to use Camzyos, it is a one year benefit and is approved for that time frame only.
You asked about my Metoprolol use. I had to increase my Metoprolol when I increased Camzyos to 10 mg. I take Metoprolol for Mitral Valve Regurgitation.
As per your concern about your heart stopping. I was assured by my cardiologist that anyone approved for Camzyos meets a certain criteria and the way I receive an ECHO every 22 days, then meet with my cardiologist helps me feel like I am being tracked very closely. I do not believe they would approve you without believing you were a great candidate for the medicine. As a matter of fact, after talking to the nurse at the Mayo Clinic's Hypertrophic Cardiomyopathy office in Scottsdale , AZ, I learned that nearly all of their patients on Camzyos are experiencing results similar to mine. That is so encouraging. (I am a patient at the U of W in Seattle) I would love to hear more about your experience in the future.