Mavachemten

@afaith wow, thats awesome. I have had the Cleveland appointment in March scheduled since I had the ECHO and before I had the MRI. I have called a couple times, but they say they dont cancellation list. I do plan to call them again today and try again. I felt really bad yeaterday, had a monitor placed, and started Camzyos last night, to say I feel like an experiment is an understatement. But I am trying to have the outlook that I now have a diagnosis, am getting things going, and if I dont get in Cleveland earlier, at least I will have a few mths of medication down so will have a better idea of whats needs to happen going forward. The last year has been a nightmare, having every system, the worst being how sick I would get when I eat and pain in my arms and stuff. So I am relieved that I know what all of that stuff was from. I saw every doctor I could think of, no one had a clue. Changed PCPs, she did an EKG day one, and told me I needed to go see my cardiologist asasp, and called her and got me in. So I feel fortunate.

@cash298
HI Cash, Feeling sick, and knowing things are wrong is hard, you've been though so much. Wow, it does sound like a nightmare.

I'm glad to hear that you're situation is finally more understood, and that you've got ahealth care team who know what's happening.

Sorry that they don't have a waiting list at the CC. Calling never hurts esp. when your situation changes. Good you are advocating for yourself, to keep your medical team up to date on your symptoms seems really important.

Hope that the Camzyos will help you. I found some relief with the Camzyos after only about a week. Everyone is different, so you are right, it's some kind of an experiment in that we all have to try it and see how it goes.

all best wishes

Thank you for your support. The AVJ node ablation went quickly and well. I do feel better already. Waking up from anaesthesia was hard, but that is a different matter. Now, I think it is a matter of wait-and-see about the ''tune-ups'' of the pacemaker and the high blood pressure. But the quality of my sleep has definitely improved.

@tamelton Thank you so much.

Hi I am 65year old woman with hcom Sam and have been treated by cardiologist for the past 5 years with medics after a recent feinting episode and trip to hospital Sydney Australia I was going to have surgery, but after angiogram, cardiologist said I qualified to try mavacamten which has only been approved in Australia for the past 12 months. I am on 5mg and after 3 weeks feel amazing no shortness of breath just feel a bit tired at times. It’s a miracle drug, I feel very lucky

Hello @mareemullins and welcome to Mayo Clinic Connect. You've come to a great place to share your story with others walking the same path.
It is wonderful to hear you are feeling so good...especially after such a frightening experience.
Have you had a chance to read all the Camzyos stories? The Camzyos group is full of people who share their ups and downs while taking this drug for HOCM. Not everyone has a happy ending with Camzyos, but it sounds like you have started off with great results.
Aside from the HOCM, are you healthy and active?
Is your cardiologist educated well in HOCM?

@mareemullins
Wonderful blessing! My story is much like yours except I am about 12 years older than you. I have had HOCM for probably 20+ years and have been on Camzyos 3+ years. Camzyos has been a life changer from day one.
You likely have many good years ahead of you! Now .... Take care of the other aspects of your health. Good food, weight, moderate exercise, hydration, no smoking, etc. Be involved with other people in groups like church, hobbies, neighborhood, and service to others. Make sure you get experienced echo cardiogram monitoring and keep an eye on your genetic family members.
Peace to you, and I am very thankful as well!
More of my HOCM history is posted on this site.

@karukgirl Hi Debra I am healthy and well definitely feeling like walking more now which is understandable I will ask my new cardiologist about how much excercise I should be doing. Unfortunately the cardiologist I saw 12 months ago in Brisbane Australia miss diagnosed me and sent me on my way the new cardiologist was very surprised that she didn’t send me to hospital then. I guess not all cardiologist are fully aware of the signs to look out for which is a worry, I will ask my new cardiologist how we let her know what’s happened and what she missed when I see him in March so she doesn’t miss diagnose other patients. The care

@mareemullins Congratulations! That is a miracle drug. I was on the trial drug for about 4 years. Never had a problem and the drug reconstructed my heart so it is almost normal.
It will give people like us years extra to live and love life.