1. < Hypertrophic Cardiomyopathy (HCM)
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Newly diagnosed obstructive HCM: seeking advice and reassurance

Posted by MS @mshcm, Sep 17 10:16am

Hello everyone,

I was diagnosed with obstructive hypertrophic cardiomyopathy in November 2025, at the age of 51, following a severe pulmonary infection. Before this episode, the condition had been completely silent, and I had lived a normal and active life without knowing that I had it. I have no known family history of HCM or sudden cardiac death.

At the time of diagnosis, I had significant obstruction, with an LVOT gradient of approximately 115 mmHg. I have now been taking mavacamten and verapamil for about six months. My response to treatment has been very encouraging: the obstruction is now almost absent at rest, and my gradient with exercise has fallen below 30 mmHg.

My recent echocardiogram and ECG were very reassuring. My latest 48-hour Holter monitor was also excellent, with no concerning rhythm disturbances. I am able to live normally, exercise, and have very few symptoms, apart from occasional fatigue.

Despite these positive results, I still struggle emotionally with the diagnosis. Because the disease is new to me, I often worry about sudden cardiac death, future complications, whether the obstruction could return, and whether the condition could progress even while I am doing well. I have two children whom I love more than anything, and the fear of leaving them can sometimes become overwhelming.

I would be very grateful to hear from people with a similar experience:

• Has anyone had a very high gradient that became minimal with mavacamten?

• Did your condition remain stable over time with treatment?

• Were you able to return to a normal and active life?

• If medication controlled the obstruction well, did your doctors recommend continuing treatment rather than undergoing a septal myectomy?

• How did you learn to manage the anxiety and fear associated with HCM?

I understand that every case is different and that only my cardiologist can assess my personal risk. I am mainly looking for shared experiences, reassurance, and support from people who understand what it feels like to receive this diagnosis.

Thank you very much for reading and for sharing your experiences.

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

Profile picture for brumasterj
brumasterj | @brumasterj | Oct 7 8:02am

56 at time of diagnosis
Resting gradient 48
Valsalva 150

Inwas very active person and had multiple exercise induced heart failures before my diagnosis
Got on camzyos to get me stronger for surgery
Resting 11
Valsalva 40

I stayed on camzyos for 5 months before surgery
My advice listen to your body and stay in touch with your cardio team

You know your body and you know when something is not right
I went years being misdiagnosed before i finally went to the mayo

Good luck

REPLY
1 reply
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | Oct 7 9:43am
In reply to @brumasterj "56 at time of diagnosis Resting gradient 48 Valsalva 150 Inwas very active person and had..." + (show)
Profile picture for brumasterj @brumasterj

56 at time of diagnosis
Resting gradient 48
Valsalva 150

Inwas very active person and had multiple exercise induced heart failures before my diagnosis
Got on camzyos to get me stronger for surgery
Resting 11
Valsalva 40

I stayed on camzyos for 5 months before surgery
My advice listen to your body and stay in touch with your cardio team

You know your body and you know when something is not right
I went years being misdiagnosed before i finally went to the mayo

Good luck

Jump to this post

@brumasterj, nice to see you back sharing your wonderful and insightful knowledge.
Did you have your sternal surgery?
How did it go?
I have been thinking about you!

REPLY
1 reply
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Linda, Volunteer Mentor | @walkinggirl | Oct 8 7:03am
In reply to @karukgirl "@brumasterj, nice to see you back sharing your wonderful and insightful knowledge. Did you have your..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

@brumasterj, nice to see you back sharing your wonderful and insightful knowledge.
Did you have your sternal surgery?
How did it go?
I have been thinking about you!

Jump to this post

@brumasterj Yes, how did your sternal surgery go? I, too, was thinking about you and glad you are here again contributing to the discussions!

REPLY
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brumasterj | @brumasterj | Oct 8 7:37am

Thank you!
Yes had my sternal reconstruction done 3 weeks ago yesterday at phoenix Mayo. Split the sternum cleaned out all soft tissue and soft bone removed the xiphoid because it was inverted and cleaned all scar tissue from the previous surgery! Wired me back with 15 wires! Day 1 was painful they kept me knocked out
Day 2 still painful drain tube was put on right side of ribs made breathing hard and walking difficult
Day 3 and 4 lots better after removing drain tube made the long drive home on day 5
They want me to live in a make believe tube for 8 weeks and then we will ease into physical therapy

Surgeon believes it was nothing i did wrong to not heal he just thinks because of how my physical body is the muscles were pulling on the bone area and felt i probably needed more wiring than the standard six wires they initially went in with.

Like i said before i really did not want to post this for fear of scaring people away from the surgery, I hope those that see this realize it can happen but it is very slight chance of it happening!

Thanks for the thoughts

REPLY
1 reply
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craigfisher99 | @craigfisher99 | Oct 11 10:53am

Good morning. I've been on Camzyos for over 5 years. I responded very well and I went from a severe gradient to none. Doing valsalvas shows no gradient either. For me, it's a miracle. I go to Rochester annually for a check up, get my echos done on time and ask before adding or stopping any meds. I hope this helps.

REPLY
1 reply
Profile picture for MS
MS | @mshcm | Oct 11 12:22pm
In reply to @craigfisher99 "Good morning. I've been on Camzyos for over 5 years. I responded very well and I..." + (show)
Profile picture for craigfisher99 @craigfisher99

Good morning. I've been on Camzyos for over 5 years. I responded very well and I went from a severe gradient to none. Doing valsalvas shows no gradient either. For me, it's a miracle. I go to Rochester annually for a check up, get my echos done on time and ask before adding or stopping any meds. I hope this helps.

Jump to this post

@craigfisher99 thank you so much for your review that’s very good to know!

REPLY
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soozyq | @soozyq | 3 days ago

A common thread in most of these posts is that the patients were originally diagnosed with a heart murmur. Perhaps doctors should be required to give echocardiograms when hearing a murmur. That may help patients sooner.

REPLY
3 replies
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | 3 days ago
In reply to @brumasterj "Thank you! Yes had my sternal reconstruction done 3 weeks ago yesterday at phoenix Mayo. Split..." + (show)
Profile picture for brumasterj @brumasterj

Thank you!
Yes had my sternal reconstruction done 3 weeks ago yesterday at phoenix Mayo. Split the sternum cleaned out all soft tissue and soft bone removed the xiphoid because it was inverted and cleaned all scar tissue from the previous surgery! Wired me back with 15 wires! Day 1 was painful they kept me knocked out
Day 2 still painful drain tube was put on right side of ribs made breathing hard and walking difficult
Day 3 and 4 lots better after removing drain tube made the long drive home on day 5
They want me to live in a make believe tube for 8 weeks and then we will ease into physical therapy

Surgeon believes it was nothing i did wrong to not heal he just thinks because of how my physical body is the muscles were pulling on the bone area and felt i probably needed more wiring than the standard six wires they initially went in with.

Like i said before i really did not want to post this for fear of scaring people away from the surgery, I hope those that see this realize it can happen but it is very slight chance of it happening!

Thanks for the thoughts

Jump to this post

@brumasterj
WOW! You had quite a time there in Phoenix.
It sounds like a very intensive reconstruction you underwent. I have 9 wires and I'm not a big person...hopefully these new 15 will do their job.
I am sorry you had to go through this, but it sounds like you have your usual upbeat attitude working for you.
That's what I like about you!
You may hit some speed bumps, but you accept them and move on.
We can all use an attitude like that.
Life is perfect, we are not perfect, and acceptance of negative things when they happen can help our journey on this planet.
I'm glad you are doing well. Eight weeks is a long time to be still and behave.

And don't worry about others who read your insightful post...this is real and it can happen. You are a small % that this happens to.
How's it going? Feeling better these last weeks?

REPLY
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | 3 days ago
In reply to @soozyq "A common thread in most of these posts is that the patients were originally diagnosed with..." + (show)
Profile picture for soozyq @soozyq

A common thread in most of these posts is that the patients were originally diagnosed with a heart murmur. Perhaps doctors should be required to give echocardiograms when hearing a murmur. That may help patients sooner.

Jump to this post

Hi @soozyq, and welcome to Mayo Clinic Connect.
You posted in the Hypertrophic Cardiomyopathy group, do you have this condition?
You're right about many of the HCM folks here having murmurs.
An echo is done for murmurs too, so that is something already being looked at.
The trouble is making sure the tech doing the echo is proficient, the doctor reading the echo is looking for the obstruction and all the measurements done like the LVOT pressures.
HCM is a wily critter. You can have good days and be fine, and have terrible days and be afraid you are having a heart attack.
I had a murmur for 40 years. It was fine. Until it wasn't and that's when everything changed. Didn't happen overnight, but rapidly progressed.
So, do you also have a murmur and known HCM?

REPLY
1 reply
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jachrist | @jachrist | 3 days ago

I was diagnosed with asthma and I was on several inhalers before having a sudden cardiac arrest. Finally I was diagnosed with HOCM. Yes more people need echocardiograms to get an accurate diagnosis. I then had surgery (alcohol septal ablation) and Im substantially better. However I have cardiac amyloidosis now and my heart does not pump adequate blood to my brain.

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