1. < Hypertrophic Cardiomyopathy (HCM)
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Next Steps?

Posted by mustang68 @mustang68, May 23, 2025

Hi Everyone. Posting again and looking for thoughts. I had my follow up Echo yesterday. My resting gradient is 7 and my Valsalva gradient is 10. I was diagnosed 2/24 with HOCM by gradient was 54 at rest. 67 year old. I’ve been in Camzyos for 11 months( 5mg @8 months and 10mg @ 3 months). I still feel pretty tired or fatigued most of the time. The dr said to me yesterday “ well sometimes we move patients from the oHCM category to the nHCM category. He added Jardiance to my med cocktail and sent me on my way. My initial hope was that if the Camzyos didn’t work I would go for a septal reduction. But from the sound of it if my gradient is low not sure if septal reduction will help. My BNP is 43 (was 54 before starting Camzyos) my E/E’ is 15.66 and my E/A ratio is 1.15. My Atrial LA Volume index: 36.9 and my LA Volume is 80.8 ml. He’s saving by all accounts I should be feeling better. My hope is that further time will help or switching to Afichemten if it is proven to help those with nHCM. I’m trying to lose weight (5’11 218lbs) pray for the best. My symptoms all came on suddenly 8/13/23 two months after my pci of my Right artery. It would seem odd that a “stiff heart/diastoic dysfunction so suddenly unless it was the HOCM. No micro vessel issues and the follow up Cath showed fully opened stents. My only thought is that my HOCM is extremely dynamic. I’m on 10mg Bystolic, 2.5 Amolodapine, 20 Lipitor and just started Jardiance yesterday of 10mg. So any thoughts? Stay the course? Has anyone benefited from adding Jardiance? Anyone had their HCM symptoms come on suddenly?
Thank you all. I appreciate being able to express on this platform and I value your feedback.
Ps- MRI showed less than 15% fibrosis and I do plan to have a follow up stress Echo to see if there is a meaningful destruction under stress.

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emo44 | @emo44 | May 25, 2025
In reply to @mustang68 "Correct/ it’s for diabetics but recently through clinical tests for some Empagliflozin (Jardiance and other trade..." + (show)
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Correct/ it’s for diabetics but recently through clinical tests for some Empagliflozin (Jardiance and other trade names known as a SGLT-2 in inhibitor) was discovered that it promotes active relaxation of the heart and improves diastolic dysfunction (DD) in many. They don’t know entirely why it works for DD. It wasn’t developed for it. I guess it’s kinda like how Viagra was produced to control blood pressure but helped something entirely different. I’m at my wits end so I’ll try anything at this point.

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I have Apical HCM (non-obstructive). So, I have diastolic dysfunction, an aneurysm on the apex of my left ventricle. Then two years ago, I presented with persistent AF with RVR. And, I was very symptomatic. After trying rate control, which didn't work, I am now on an antiarrhythmic medication (dofetilide) which worked great for about a year. Then I started having occasion breakthrough episodes. In February of this year my HCM cardiologist at Mayo Rochester started me on Jardiance because I continued to have symptomatic AF breakthrough. He hopes it will lower my filling pressures and "fine tune things from a diastolic standpoint." Don't see him until September so not certain it is helping, but have not had a breakthrough so fingers crossed.

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walkinggirl | @walkinggirl | May 25, 2025
In reply to @ginabassford "Keep in mind that Camzyos does not fix an obstruction. It relaxes the heart and symptoms..." + (show)
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Keep in mind that Camzyos does not fix an obstruction. It relaxes the heart and symptoms may subside, but when you go off Camzyos, it is likely the symptoms will return.

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Yes, when my cardiologist and I were discussing aspects of my completed septal myectomy, I asked about Camzyos. His reply was that from his reading the medical literature is that many if not most people eventually need surgery.

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Mentor
Debra, Volunteer Mentor | @karukgirl | May 25, 2025
In reply to @mustang68 "Thank you so much for your kind response. Unfortunately I have been to 4 cardiologists from..." + (show)
Profile picture for mustang68 @mustang68

Thank you so much for your kind response. Unfortunately I have been to 4 cardiologists from Stamford Hospital, two HCM specialists from Columbia NYC, two from Hartford hospital and an HCM specialist from Yale. Everything was going fine with me until 65 1/2. It is disappointing. Opinions from different doctors 1) you have a stiff heart from high blood pressure 2) you have obtrusive HCM 3) you have non-obstructive HCM. 4) you have small vessel disease 5) we’ve fixed your obstruction with the Camzyos but you still have “stage 2” diastolic dysfunction. 6) your diastolic dysfunction shouldn’t be giving you the symptoms you have. It is your stress and anxiety (not in my opinion ).
I just started Jardence yesterday. I’m hoping it helps my diastolic function. If it does not I am going to see if I can get into the Imbria for Nireflex trial. But in the meantime It seems from everything I’ve read that Mayo Rochester is the best for evaluation. Also, perhaps Aficamten will work better. As you can tell I’m a little frustrated. I’m not going to give up and still try to lift all rocks. Yes- crazy disease. I have read so much. For me how quickly it came on is so confusing. Best to you. Thank you. ✌️😊

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@mustang68,
I may be biased but I do believe the Mayo in Rochester is the leading expert in HCM/HCOM. Dr Steve Ommen is the top of the top for hypertrophic cardiomyopathy and he sets many standards of treatment for this insidious disease.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
I don't usually post so many links for homework assignments, but thought you may like this one too.
From what you stated...you have seen a lot of specialists.
It must be terribly frustrating to be fine and than suddenly (or what seems sudden) your whole world changes and your life is nothing like it was before.
I know that feeling well!
I must say this, because it is true, your life is yours and you owe it to yourself to learn as much as you can about this condition and if you need yet another opinion, maybe make it with Mayo Clinic?
I saw my local small town cardiologist when I started having more issues. I had a mitral valve prolapse and aortic stenosis. Then I had small vessel disease. Then I had worsening MVP, and finally he diagnosed me with a rare congenital disease called Sub-aortic membrane and I would need open heart surgery right away. And he was going to refer me to our local heart surgeon.
Hmm...so it's rare, eh? How many sub-aortic membrane surgeries has this guy done?
I sought a second opinion outside the area. This guy said I had nothing tremendously wrong with me, but I did have a murmur. Well I can tell you I listened to my body and knew something was terribly wrong.
I did not want open heart surgery in any form, so I went to Cedars-Sinai and was finally correctly diagnosed with HOCM.
Then I went to the Mayo in Rochester. This is all after doing my own research about top COEs (Centers of Excellence) in HCM.
By the time I got to the Mayo, my heart was failing, I could hardly tie my shoes some days and other days be fine, but I still needed open heart surgery.
I am sharing all this because it sounds like you have gone through the proverbial wringer and still feel uncertain. I cannot comment on your current list of conditions, but gosh...it sounds like you need clarification that is 100%!
Mayo Clinic is worth your time to investigate in my opinion. You have so much going on, What do you have to lose?

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1 reply
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mustang68 | @mustang68 | May 25, 2025
In reply to @karukgirl "@mustang68, I may be biased but I do believe the Mayo in Rochester is the leading..." + (show)
Profile picture for Debra, Volunteer Mentor @karukgirl

@mustang68,
I may be biased but I do believe the Mayo in Rochester is the leading expert in HCM/HCOM. Dr Steve Ommen is the top of the top for hypertrophic cardiomyopathy and he sets many standards of treatment for this insidious disease.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
I don't usually post so many links for homework assignments, but thought you may like this one too.
From what you stated...you have seen a lot of specialists.
It must be terribly frustrating to be fine and than suddenly (or what seems sudden) your whole world changes and your life is nothing like it was before.
I know that feeling well!
I must say this, because it is true, your life is yours and you owe it to yourself to learn as much as you can about this condition and if you need yet another opinion, maybe make it with Mayo Clinic?
I saw my local small town cardiologist when I started having more issues. I had a mitral valve prolapse and aortic stenosis. Then I had small vessel disease. Then I had worsening MVP, and finally he diagnosed me with a rare congenital disease called Sub-aortic membrane and I would need open heart surgery right away. And he was going to refer me to our local heart surgeon.
Hmm...so it's rare, eh? How many sub-aortic membrane surgeries has this guy done?
I sought a second opinion outside the area. This guy said I had nothing tremendously wrong with me, but I did have a murmur. Well I can tell you I listened to my body and knew something was terribly wrong.
I did not want open heart surgery in any form, so I went to Cedars-Sinai and was finally correctly diagnosed with HOCM.
Then I went to the Mayo in Rochester. This is all after doing my own research about top COEs (Centers of Excellence) in HCM.
By the time I got to the Mayo, my heart was failing, I could hardly tie my shoes some days and other days be fine, but I still needed open heart surgery.
I am sharing all this because it sounds like you have gone through the proverbial wringer and still feel uncertain. I cannot comment on your current list of conditions, but gosh...it sounds like you need clarification that is 100%!
Mayo Clinic is worth your time to investigate in my opinion. You have so much going on, What do you have to lose?

Jump to this post

Thank you so much. I agree. I need to pursue this. Hope you are doing well now. Best, John

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