Just Diagnosed with HCOM

Still trying to understand but my EF says 63%
Mild SAM with 6.56 mmHG / 15.8mmHG max gradient at rest/ valsalva.

@hougoss welcome to Connect.
I definitely understand your feelings at the moment as that was me 4 years ago when I started having HCM symptoms at 37. I went from being able to do pretty much anything to not being able to go up a flight of stairs without being out of breath and feeling like my heart would jump out of my chest. And I work at a juvenile corrections facility where there are A LOT of stairs and it came to the point of not being able to do my job well. And it took a year for me to be diagnosed. And it was pretty rough the past 4 years until this May when I was put on Camzyos. I can walk long distances, stairs no longer give me trouble and there is no shortness of breath or heart pounding. The reality is that we will have to live with this condition and you are in the early stages of acceptance. And it is ok to take your time and process at your own pace. Everything you are feeling is valid and normal. When you get through this phase you will start seeing all the possibilities and everything that there still is in life for you. Just don’t get too caught up in the phrases like “heart failure” and the like, because they do sound very scary, but that is just the medical terminology. I suggest you read up all you can about HCM (when you’re ready) and talk to your cardiologist about your treatment plan. And ask ALL the questions you have, even write them down, if you need to. All will be well, I am sure of it.

Thank you for your encouraging comment. I am a young 65 yr old and in good shape otherwise so I feel better hearing stories like yours and how you can remain active without the symptoms you described. It has been a year since I first had similar symptoms and figured I was just getting older and out of shape. I was reading that some people who have HCM are asymptomatic!

@hougoss
The norm per my cardiologist for EF is 50-70. You are at 63%. That is very good.

My EF is 25-30 (changes and can be subjective). My wife's EF is 70.

If you meant trying to understand EF it stands for ejection fraction. It is the amount of blood that the heart pumps out after being filled. Stiffening heart muscle, cardiomyopathy, enlarged heart, electrical problems can all affect the EF.

Ok that is helpful. Thank you.

@hougoss Like everyone else has said glad you got connected here! We all share so much or the same thing in common! Sypmtoms that we started having and then being told that 3Letter acronym with obstruction was hard to digest!
We cant stress it enough to make sure yiur dealing with a COE (center of Excellence) with your diagnosis and with ykur treatment!
It can be very easy to be misdiagnosed and sent down a path of wrong information and prescribed medicine that will not work if your doctor or facility is not versed in HCM
I wish you the best and if you have any questions please dont hesitate to reach out! But most importantly have these conversations with your cardiologist, and your prescribing camzyos pharmacist

I had my appointment with the Interventional Cardiologist at Cedars Sinai. First I had a 'enhanced Echo' followed by a EKG. He pretty much said I need a Septal Alcohol Ablation. After gathering information about this I feel pretty comfortable. My symptoms are minimal currently . A little SOB with activity and sometimes feeling light headed. So best to do this soon so that my symptoms don't get worse. It is frustrating how little people know of HOCM! I set surgery date for Aug 20. Waiting!

So did the doctor not recommend Camzyos as a treatment? Just wondering if the alcohol ablation is a better option for me as well.

I have seen 2 cardiologist and after looking at my ECHO and EKG they both said I need the ablation. No mention of Camzyos

I have been on Camzyos 5 mg for 15 months. A lot of ups and downs. My last echo my EF was at 45. My dr recommended for me to go off Camzyos right away. Do to it causing heart failure. Have to have another echo in a month. Very frustrating because now getting dizziness , also problems with other medication because of this. Diabetes and thyroid. Never had issues until Camzyos. Finally got everything under control. An now off again. I also have breast cancer, did anybody else have these issues.