1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for Colleen Young, Connect Director
Moderator

HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

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.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page. 

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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 29, 2023
In reply to @summerrobin "Summerrobin. I’m 73 year old female the went into atrial fibrillation 2 years ago. After several..." + (show)
Profile picture for summerrobin @summerrobin

Summerrobin. I’m 73 year old female the went into atrial fibrillation 2 years ago. After several tests I have been diagnosed with Hypertrophic cardiomyopathy. The afib has not been stabilized and I’m not a candidate for an ablation. I am now in afib continually with a set of new drugs. I'm always optimistic when a I start new med. I'm hear to read of other like minded and health minded people. 😊

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WELCOME! Welcome to Mayo Connect @summerrobin. I'm so glad you found us. You definitely came to the right place to find out from other like-minded folks with your same condition. I'm so sorry to hear that your atrial fibrillation is not controlled. That has to be stressful. I hope this gets the attention it needs from your cardiologist. It's not good to stay in atrial fibrillation continuously. Has your cardiologist kept an eye on you with regular follow-up? Besides having atrial fibrillation and now HCM (hypertrophic cardiomyopathy) is your health pretty good? Are you able to get out and walk and exercise?

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summerrobin | @summerrobin | Oct 29, 2023

Summerrobin. I’m 73 year old female the went into atrial fibrillation 2 years ago. After several tests I have been diagnosed with Hypertrophic cardiomyopathy. The afib has not been stabilized and I’m not a candidate for an ablation. I am now in afib continually with a set of new drugs. I'm always optimistic when a I start new med. I'm hear to read of other like minded and health minded people. 😊

REPLY
1 reply
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 29, 2023
In reply to @cwarren29860 "Hi, Im Claudia from SC and currently being treated for HOCM in the Jacksonville facility. I..." + (show)
Profile picture for cwarren29860 @cwarren29860

Hi, Im Claudia from SC and currently being treated for HOCM in the Jacksonville facility. I have a surgery consult scheduled for 11/21 to talk about moving forward with a septal myectomy.

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Hello Claudia @cwarren29860 , and a big WELCOME to Mayo Connect! I am so glad you found this site...you will learn a lot from other members with your same condition...like me 🙂
I had a septal myectomy and papillectomy at the Mayo in Rochester three years ago. If you want, feel free to ask me anything...anything at all. If I can help alleviate some of the fear the goes along with being diagnosed with HOCM and finding out you need open heart surgery I would be happy to do so. Take a look around here...there is a lot of information. When did you find out you had HOCM? How long did you have symptoms before you were diagnosed?

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cwarren29860 | @cwarren29860 | Oct 29, 2023

Hi, Im Claudia from SC and currently being treated for HOCM in the Jacksonville facility. I have a surgery consult scheduled for 11/21 to talk about moving forward with a septal myectomy.

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1 reply
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nanamc1957 | @nanamc1957 | Oct 20, 2023

Hi I'm Sheri 66 been on it for 5 days. No side effects so far other than insomnia. If I were to get side effects would I get them by now ???

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nanamc1957 | @nanamc1957 | Oct 17, 2023
In reply to @newtosohcm "Good morning folks: 1) Pardon the typo above which stated that I was diagnosed at UCSF..." + (show)
Profile picture for newtosohcm @newtosohcm

Good morning folks:

1) Pardon the typo above which stated that I was diagnosed at UCSF in May 2024!! It should have said May 2023.

2). Yesterday was my day 7 on 5 mg Camzyos. I’m. Keeping my fingers crossed because I actually had more energy yesterday than I have in a very long time.

I really appreciate this site and am very interested in hearing others’ stories, especially am tuned into those who are now on Camzyos to hear if it has helped you. I am trying to explain to my family what exactly a ‘myosin inhibitor’ is!

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I just started day 2 today. Good luck on your journey

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nanamc1957 | @nanamc1957 | Oct 17, 2023
In reply to @karukgirl "@nanamc1957, WELCOME!! Welcome to Mayo Connect and the Hypertrophic Cardiomyopathy Group. I'm so glad you are..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

@nanamc1957, WELCOME!! Welcome to Mayo Connect and the Hypertrophic Cardiomyopathy Group. I'm so glad you are here, because this is where you will find a warm, welcoming community of folks just like you. I think we are all a little freaked out when we first learn what we have, and learning to live with it and it's symptoms is definitely a challenge for some. There are some amazing Camzyos warriors on here, like @kelliw and @jaymaysea. Both these special people have recently begun their journey on Camzyos and have shared their experiences with all of us. They both have different experiences, but still they share what they are going through to help others. While we wait for a Camzyos member to jump in here, when did you start Camzyos? What are the side effects that scare you? Did your cardiologist go over them with you? Because as we know there are risks for darn near everything we take, even an aspirin or Advil has side effects.

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I started this week. I spoke with cardiology team. It was meds I take and possible side effects thank you

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Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 16, 2023
In reply to @nanamc1957 "New here and scared was Dx 2 months ago. Starting camzyos but side effects are scaring..." + (show)
Profile picture for nanamc1957 @nanamc1957

New here and scared was Dx 2 months ago. Starting camzyos but side effects are scaring me to death. Anyone taking that can give advice please I'm 66

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@nanamc1957, WELCOME!! Welcome to Mayo Connect and the Hypertrophic Cardiomyopathy Group. I'm so glad you are here, because this is where you will find a warm, welcoming community of folks just like you. I think we are all a little freaked out when we first learn what we have, and learning to live with it and it's symptoms is definitely a challenge for some. There are some amazing Camzyos warriors on here, like @kelliw and @jaymaysea. Both these special people have recently begun their journey on Camzyos and have shared their experiences with all of us. They both have different experiences, but still they share what they are going through to help others. While we wait for a Camzyos member to jump in here, when did you start Camzyos? What are the side effects that scare you? Did your cardiologist go over them with you? Because as we know there are risks for darn near everything we take, even an aspirin or Advil has side effects.

REPLY
1 reply
Profile picture for nanamc1957
nanamc1957 | @nanamc1957 | Oct 16, 2023

New here and scared was Dx 2 months ago. Starting camzyos but side effects are scaring me to death. Anyone taking that can give advice please I'm 66

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1 reply
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DL | @riverchic | Aug 24, 2023
In reply to @karukgirl "It is so incredible really that so many of us seem to have the same experience..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

It is so incredible really that so many of us seem to have the same experience of being misdiagnosed for years! I am so glad to hear you are feeling better now. For me that awful shortness of breath on the least amount of exertion, the tachycardia and head rushes just tying my shoes...it all disappeared right after surgery. It's no wonder you don't have much stamina...you just went through open heart surgery!!! It will take some time to get that back. One day at a time. I would guess that you also had blood loss anemia...that takes time to recover and will make you super tired besides everything else you are going through. Sounds like you are a champ! You are active and the hard part is behind you. I think the decision to go forward with open heart surgery is the hardest part of this whole deal. Once you make the decision, things just fall into place. I hope you never get atrial fib again too! Sounds freakishly scary! When do you see the cardiologist next? Did you write down any questions for him/her for next visit?

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You know, I was feeling so badly. My heart rate was erratic ( my heart would thumb now & then) in addition to always feeling tired and having shortness of breath with little exertion, I was longing for some kind of solution. I never dreamed it would be open heart surgery. As no medications were helping, it was an easy decision, especially after speaking with Dr Ommen and learning about The Mayo Clinic’s program. I actually was relieved the day I was given my surgery date. I just knew I would feel much better after recovery.
I will see my cardiologist Wednesday, Aug 30. I have a list of questions prepared. He ordered a 48 hour heart monitor and echocardiogram which I completed in June. I am very interested in discussing the results with him and seeing how I have progressed. I will also be asking about stopping Xarelto and lowering metoprolol. Thank you so much for your feedback, words of encouragement and advice!!

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