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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. ✌️😊
Replies to "Thank you so much for your kind response. Unfortunately I have been to 4 cardiologists from..."
@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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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.