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.

jaymaysea | @jaymaysea | Jul 24, 2024
In reply to @karukgirl "Hi @don69, and a warm welcome to Mayo Clinic Connect! https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ I do not know if..." + (show)
@karukgirl

Hi @don69, and a warm welcome to Mayo Clinic Connect!
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I do not know if you have had an opportunity to poke around here on Connect or not, but I have posted a link to the Camzyos support group. This is an amazing support group and you can learn a lot from them. I would highly recommend you reading some of the posts there.
@kelliw and @jaymaysea are two Camzyos troopers! I hope you read their stories.
I think anyone would be anxious about starting a new drug, so you are totally not alone. In fact, you are in the best company here on Connect. Check out the Camzyos link I sent.
Were you just recently diagnosed with HOCM (HCM with obstruction) or have you known and are now symptomatic enough for Camzyos?

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Hi @don69, This group has been invaluable to me, particularly when I was making the decision to start Camzyos and then subsequently when I was frustrated with my Dr.

You have every right to be nervous. It's still a fairly new drug. It was even newer when I started. I have been on it for 14 months.

I would recommend that you do your research and then follow your heart/ have faith. It's important that you be informed so you can be your best advocate. Know your options.

The drug has been highly effective for many in this group, giving them a new lease on life. For me it has not been as life changing as I had hoped. I still have shortness of breath and a high heart rate upon exertion. I am going to Cleveland Climic in 2 weeks for a more through evaluation. Mayo was harder for me to get to. Next week I am having a new MRI that NHI is developing to examine the heart under exertion.

I may end up having open heart surgery. But, I decided to give Camzyos a try as an alternative first.

Only you can make the decision on how to tackle your HCM. But remember, nothing beats a failure but a try. Good luck! We are here for you.

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kelliw | @kelliw | Jul 23, 2024
In reply to @kelliw "I am on 2.5 Camzyos. I started on 5 mg and they moved me down, which..." + (show)
@kelliw

I am on 2.5 Camzyos. I started on 5 mg and they moved me down, which I wasn't happy about at first, but am doing fine on it. I started March 2023. I was in REALLY bad shape when I started taking Camzyos and it has given me my life back. I am so thankful! I will look up my gradient.

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Which gradient would be helpful? I am still not sure what all of this means.

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kelliw | @kelliw | Jul 23, 2024

I am on 2.5 Camzyos. I started on 5 mg and they moved me down, which I wasn't happy about at first, but am doing fine on it. I started March 2023. I was in REALLY bad shape when I started taking Camzyos and it has given me my life back. I am so thankful! I will look up my gradient.

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1 reply
joanallione | @joanallione | Jul 23, 2024
In reply to @kelliw "I went to Steamboat, CO, last summer, which is 6900' and took the gondola up to..." + (show)
@kelliw

I went to Steamboat, CO, last summer, which is 6900' and took the gondola up to close to 10,000' and felt fine. I didn't go on any hikes, but went on a white water rafting trip and floated down the Yampa river though. I hope this helps. 🙂 Enjoy your trip!

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thanks what medication are you on if any? And how bad is your gradient?

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kelliw | @kelliw | Jul 23, 2024
In reply to @joanallione "Does anyone with HOCM have issues with going up to higher altitudes like over 5000 feet?Im..." + (show)
@joanallione

Does anyone with HOCM have issues with going up to higher altitudes like over 5000 feet?Im going ti 8000 ft… if so how do you deal with it. I was recommended diamox…

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I went to Steamboat, CO, last summer, which is 6900' and took the gondola up to close to 10,000' and felt fine. I didn't go on any hikes, but went on a white water rafting trip and floated down the Yampa river though. I hope this helps. 🙂 Enjoy your trip!

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joanallione | @joanallione | Jul 23, 2024

Does anyone with HOCM have issues with going up to higher altitudes like over 5000 feet?Im going ti 8000 ft… if so how do you deal with it. I was recommended diamox…

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joanallione | @joanallione | Jul 23, 2024
In reply to @whidbey "It sounds like you have a very full life in your current condition, so I understand..." + (show)
@whidbey

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.

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are you on Whidbey Island? i have a lit of friends and students there. just wondering…Do you go up to higher altitudes like over 5000 feet and if so hows your heart at those altitudes?

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hopenr | @hopenr | Jul 22, 2024

Hi, my name is Hope and I am 71. Was diagnosed with HoCM about 3 years ago. I have good days and bad days and right now I am in a string of bad days meaning fairly constant tension in my left neck and cheek, some SoB, head pressure. Add to this insomnia and I find myself in constant fear. I take verapamil and amiodurone. Depression is taking over. I see my cardio following an echo in 6 weeks. And I am starting therapy again. 2 months ago I ran a 5k and today, I am exhausted and disheartened. A support group is just what I need.

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Snicalfritz | @snocalfritz | Jul 22, 2024
In reply to @karukgirl "https://connect.mayoclinic.org/discussion/long-qt-syndrome/ Hello there @snocalfritz, and welcome to Mayo Clinic Connect. Wow...you have a heart history for..." + (show)
@karukgirl

https://connect.mayoclinic.org/discussion/long-qt-syndrome/
Hello there @snocalfritz, and welcome to Mayo Clinic Connect.
Wow...you have a heart history for sure!
I am so sorry that you have now experienced yet another set of heart issues to deal with. No wonder you are so frustrated. There is only so much we can control, and doing your best by being active is so proactive...and now this!

I have posted a link above to an older discussion, but it may still be relevant to your seeking information.
I am curious...do you also have HCM? Hypertrophic Cardiomyopathy? This is the support group for all things HCM and HCM with obstruction.
When do you see your doctor again?

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Soon in one week.

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Mentor
Debra, Volunteer Mentor | @karukgirl | Jul 22, 2024
In reply to @snocalfritz "Hi Colleen. I am a heart patient with a twenty year history of heart issues. I..." + (show)
@snocalfritz

Hi Colleen. I am a heart patient with a twenty year history of heart issues. I have had a heart attack, double bypass, have 11 stents and last summer had an aortic value replaced. On July 5, I visited my cardiologist and was told that my total cholesterol was 91 and triglycerides were 170 which is down from over 300. Then on July 10 out of the blue I had terrible heart pain that two nitros didn’t relieve. Bottom line I was diagnosed with bradycardia and some QT prolongation. I was put on Florinef .1 mg and Lexapro dose was cut in half to 10 mg. I am so frustrated because I have been so active in recent months and now this.

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https://connect.mayoclinic.org/discussion/long-qt-syndrome/
Hello there @snocalfritz, and welcome to Mayo Clinic Connect.
Wow...you have a heart history for sure!
I am so sorry that you have now experienced yet another set of heart issues to deal with. No wonder you are so frustrated. There is only so much we can control, and doing your best by being active is so proactive...and now this!

I have posted a link above to an older discussion, but it may still be relevant to your seeking information.
I am curious...do you also have HCM? Hypertrophic Cardiomyopathy? This is the support group for all things HCM and HCM with obstruction.
When do you see your doctor again?

REPLY
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