1. < Hypertrophic Cardiomyopathy (HCM)
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.

Donna | @dleston | Aug 23, 2023
In reply to @captainterry "Contact for sure: https://4hcm.org They are the leading organization nationally advocating for, and helping patients. And,..." + (show)
@captainterry

Contact for sure:
https://4hcm.org
They are the leading organization nationally advocating for, and helping patients. And, they are based in New Jersey.

Jump to this post

Hi captainterry,

I will definitely contact them! Thanks for your reply 🙂

REPLY
Donna | @dleston | Aug 23, 2023
In reply to @nbs "Have you contacted your surgical doctor's office or the HCM department at the Mayo clinic and..." + (show)
@nbs

Have you contacted your surgical doctor's office or the HCM department at the Mayo clinic and asked them for a recommendation in your area? There definitely are specialists if you are close to NYC or Phili, especially in northern NJ. I did a google search for you and found HCM departments in Bergen county and one in Morristown using "Hypertrophic cardiomyopathy specialists in NJ".

Jump to this post

Hi nbs,
I haven’t contacted my surgical team, but I will. Thanks for your help and recommendations on google search. I will check that out.

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | Aug 23, 2023
In reply to @dleston "Hi Debra, Thanks for your reply. I feel so much better now! Before my surgery, I..." + (show)
@dleston

Hi Debra, Thanks for your reply. I feel so much better now! Before my surgery, I could barely walk a flight of stairs. No A-fib since early April, thank god. That was the scariest thing ever! I don't have as much energy or stamina as I would like, but I think its the metoprolol slowing me down. I am still on 50 mg twice daily. I get a little winded when doing stairs or walking quickly. I am hoping thats a side effect of metoprolol? I am also still on Xarelto. I will reach out to the team thru the portal and get their recommendations. They do respond quickly. Thanks again for your reply. Its nice to speak to someone who has had similar experiences. Its hard to believe that so many of us have gone misdiagnosed for so long.

Jump to this post

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?

REPLY
1 reply
newtosohcm | @newtosohcm | Aug 24, 2023
In reply to @newtosohcm "I was diagnosed with symptomatic obstructive HCM in May 2023. I’m under the care of UCSF..." + (show)
@newtosohcm

I was diagnosed with symptomatic obstructive HCM in May 2023. I’m under the care of UCSF and very grateful they took me on as a patient. As a very active nearly 69 year old woman who has always been ‘healthy as a horse’ it has been a huge adjustment. It took two ‘perfect storms’ - as my N.P. calls them - that ended me up in the ER by ambulance (in Jan 2023) to then get referred to a specialty clinic at UCSF for followup testing and diagnosis in May 2024. I’m starting Camzyos today. Trying to be brave and learn all I can. I have concern for my kids who may also have inherited the gene. Very glad to have found this support group.

Jump to this post

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!

REPLY
2 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Aug 24, 2023
In reply to @newtosohcm "Good morning folks: 1) Pardon the typo above which stated that I was diagnosed at UCSF..." + (show)
@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!

Jump to this post

This site is full of information, have you had a chance to look around in the Camzyos group? They are a super helpful group of brave folks willing to try Camzyos. Some have had amazing results. Others have not. But they share honestly with each other. @kelliw, @jaymaysea, @nbs just to name a few, are Camzyos Champions!
I'm excited that you actually feel better after only 7 days...that has to be encouraging, right?

REPLY
Donna | @dleston | Aug 24, 2023
In reply to @karukgirl "It is so incredible really that so many of us seem to have the same experience..." + (show)
@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?

Jump to this post

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!!

REPLY
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

REPLY
1 reply
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)
@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

Jump to this post

@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
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)
@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.

Jump to this post

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

REPLY
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)
@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!

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.