Recent hospital admission as HIM suddenly worse. 😰😰😰

Welcome prettyinpink1965! I was also diagnosed a number of years ago but didn't have really bad symptoms until late last year. I am 75 now and have symptomatic Hypertrophic Obstructive Cardiomyopathy, a failing aortic valve, and a questionable mitral valve. I started taking 5 mg of Camzyos in June 2026, and that went to work on the thick heart muscle pretty quickly. I have just been stepped up to 10 mg Camzyos. I am pleased with that progress. Now I am being tested to see if I qualify for a TAVR to replace the aortic valve, plus I need an alcohol septal ablation to reduce the thickness of the heart muscle affected by the HOCM.
What medications are you taking for your HOCM and blood pressure?

Hello @prettyinpink1965, and welcome to Mayo Clinic Connect.
I'm glad you found our little online community of people living with HCM and HOCM (Hypertrophic Obstructive Cardiomyopathy).

I don't blame you for being scared, especially since you were just in the hospital for heart failure. Feeling like you can't take a breath would scare anyone!

Since we are all so different, no two people will have all the same signs, but with HCM, we do have many symptoms in common.
I have shared a link to the Mayo Clinic for HCM, it is here:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
And here is a link to an organization not affiliated with the Mayo Clinic:
https://www.4hcm.org/
My first question for you is do you have a cardiologist who is specialized in the treatment of HCM/HOCM?
That is so very important.
You have known you have this condition since 1996.
Have you been treated with medications during this time and yet still progressed to failure?

Please take some time to educate yourself on everything you can get your hands on about HCM/HOCM.
Please make sure you are getting the best possible care, and seek a second or third opinion.

Sixty-one is young in my opinion. I was 61 when I found out I had HOCM and needed open heart surgery.
To say I was shocked is an understatement. I had been treated for 4 or 5 years for various heart diseases, which I did not have and it all came to a stunning conclusion when I finally sought second and third opinions.
By the time I got to Mayo Clinic, my heart was failing too.
Open heart surgery was the recommendation.
I will never regret that choice, and trust me, I know how scary the thought is. There are many HOCM folks here on Connect that are taking Camzyos and the newer drug Aficamten (brand name Myqorzo) with positive and negative results.

When do you see your cardiologist again?
Have you had a second or third opinion done by an HCM specialist?

I feel your concern for your health and identify with it in many ways. I hope you receive answers, encouragement, and support in this online forum and from your doctor's office. When I have questions like yours, I am able to ask an HCOM nurse/P.A. in my patient portal and they always answer and or make an appointment to speak with me.

When I had symptoms such as you are describing, at one point, I was placed on Metoprolol (increased dosage actually) and it really helped me feel better. I mention this because you may need an increase in meds since that has been my experience. You don't mention the drugs you are on currently and what your dose of Camzyos is currently. Fluid in the lungs is serious and causes great concern for those of us with heart issues. Please reach out to your cardiologist if you aren't feeling well. Knowledge is empowering. The mind/body connection is so important, too. Please share your concerns and feelings with someone you trust because it is very true for me that sharing my concerns with someone helps them to be reduced to manageable importance. (Lose power over me)

I am so sorry you don't feel well and I truly hope you get some answers to your concerns. Your life is precious.

No doubt that all of this has been very scary and uncomfortable. The "heart failure" label is particularly scary - but, I think, also too broad given that cardiology has advanced so, so much. Try to take it one day at a time, and when you are not scared or uncomfortable, let yourself forget all about it and enjoy your life. Get yourself superb care - you will be surprised how much a good cardiologist will ease your concerns while also giving you the best treatment plans. Also - I do things that calm me - simply do a few deep exhales and then a pause before inhaling - this simple thing taps the vagus nerve and calms your system - really. We are all here for you!