Newly diagnosed obstructive HCM: seeking advice and reassurance

I am also in my 50's. I experienced some concerns in my late 30's, but I was diagnosed with a murmur and MVP. I was diagnosed about 8 years ago with HOCM. No one really clarified much with me, and camzyos was still really new. I moved to another state for a job, and I did not care for my cardiologist. I finally got one that I trust about 2 years ago. I started on camzyos in April. I had an ICD implanted in May. The results are a small improvement, but not nearly what they should be. I am scheduled at Mayo for a septal myectomy in November. The anxiety is real, and it is okay for you to spend time processing it. I think for some people it might be helpful to process this with a counselor that works with people with chronic illnesses or maybe a clergy person...
I do think it is normal to have these feelings. It is a lot to deal with. Be kind to yourself, and do the things that bring you joy. Don't let the anxiety steal all your living. You have a lot of that to do! Praying prayers of peace for you.

Wow, I am so encouraged by your amazing results taking Camzyos. I was diagnosed at almost the same age as you were, and I have been on Camzyos three years. (15 mg) I also have mitral valve regurgitation so take metoprolol for that. My results have been similar to yours; I actually call Camzyos a life altering drug because I couldn't even walk up stairs without being "winded" when I started taking it. I am 62 now and can't do everything I would like to, but I am able to do much more than before Camzyos. It sounds like you are doing very well and I am so happy for you.
I have found great comfort reading this blog and understanding the wide range of experiences with heart issues and medications. The mental/emotional aspect is very important and I appreciate you bringing it up. As mothers, we don't want to leave our children and naturally worry about that aspect of heart disease. When I asked my cardiologist what my chances of "expiring" were, he said, "you have lived a long time with HCOM and didn't know it, yet survived, your body fights and does what it needs to do." For me, that was encouraging. I am thankful my heart worked so hard for me before doctors discovered I needed intervention. I am grateful you have such a great quality of life and have experienced positive results from Camzyos. Peace to you, mama.

Hello @mshcm . As everyone else has said, feeling axious and scared is completely normal and you don't need to second guess yourself for that. I love the suggestion from @thoma175 about a counselor that works with people with chronic illnesses. My HOCM journey was quite different from yours in that I was highly symptomatic and getting worse, but undiagnosed for something like 17 years. I had pretty much resigned myself to a gradual decline and dying without ever knowing what was ailing me. So when I was almost 60 and someone finally said Obstructive HCM, for me that was a huge relief. I finally knew. And I was lucky to qualify for mavacamten which made all of the symptoms completely vanish. I have been able to deal with the remaining anxiety, including the black-box warnings about heart failure by realizing that I had lived with something for years without specific medical care. But now I would be using a medication that was doing great things for me, AND I would be under constant medical supervision by experts who knew what was going on. Might I still die from it? Sure. But the odds just got stacked in my favour compared with how they had been before. But we are all different, phsically and emotionally. Maybe spend some time reading the huge volume of stories here on Connect about HCM and Camzyos and Septal Myectomy. I'll bet you will find some comfort here - 'cause almost everyone here has lived it, or is still living it, and understands. Be well!

@whidbey merci pour ton message je me suis reconnue dans ton discours surtout concernant les enfants ☺️… mon cardiologue m a dit la même choque que j ai vécu des années avec sans le savoir donc que je pouvais continuer à vivre avec en étant sous contrôle maintenant ce qui est plus rassurant… j essaie de vivre normalement mais ausis d écouter mon corps et mon coeur en ayant le moins d angoisse possible … mon cardiologue m a dit qu avant qu il y ait une conséquence grave il y a des signes précurseurs que je devrais lui signaler … ça me rassure aussi donc je me dis qu aujourd’hui tout est sous contrôle bien sûr qu un événement peut arriver subitement mais c est le cas de la population humaine dans le monde entier et non pas que nous 😅… bon courage à toi aussi il faut rester positifs profitez de la vie et s attacher aux choses essentielles ❤️

Thank you for sharing your experience and asking specific questions. I wasn’t diagnosed until I was 70. It was like a alarm went off on my 70th birthday. I was climbing a mountain in Colorado and had a kind of burning sensation in my chest that didn’t go away for several days I ended up going to a cardiologist after I went to see my primary doctor and she referred me. They told me I I had hypertropic obstructive cardiac myopathy. I started taking small amounts of metoprolol and I moved to sea level from 8000 feet. I still continued to have symptoms and then CAMZYOS became available. I started taking it almost 2 years ago and shortly after i started I was diagnosed with uterine cancer and went through a hysterectomy and radiation. The radiation really raised my obstruction. It was up to 143 and then consistently at 123. Through ladt fall, I was only taking five mg of CAMZYOS. With my cardiologist’s recommendation I managed to get it up to 10 mh taking five in the morning and five at night and continued with the Metropol 25 MG in the morning and 25 at night…. my last Eco this Aug was normal! I don’t have any symptoms of shortness of breath when climbing stairs, etc., that I had before. Previously, I would get pain going up steep Hills or climbing stairs, now I don’t. I am now 79 and feel very grateful for CAMZYOS . I used to enjoy drinking wine and I had to completely stop drinking alcohol five years ago because it was interacting with the Metropol and then it’s not recommended with CAMZYOS which is probably just as well since now alcohol has been exposed as a primary cause of cancer. I don’t think you have to worry about sudden cardiac arrest. You have really great results with CAMZYOS and you just have to keep taking it the rest of your life and of course it interacts with a lot of things. I had a mocktail with grapefruit juice in it, not realizing there was grapefruit juice in it, and I had a real scare that night, but nothing happened. I check every supplement or medication with my specialist pharmacy because of all the interactions. I haven’t had any visits to the hospital, and the cancer is gone as far as I know so I’m right now i on a teaching tour in Europe and I do seem to get tired easily, but I am traveling and teaching five hours a day so that is understandable. I’m coming to terms with the fact that I actually need to modulate what I do because I’m almost 80! But other than that i feel great. By mistake we rented a fourth floor walk up in Denmark and I really thought I don’t know if I can do this, but I just did two stairs and then paused, caught my breath and ended the next two and I managed it!

Also about the septal ablation my doctor recommended not having that that was what was recommended before there was CAMCYOS it’s a dangerous operation and there’s no reason to do it. If your HOCM is controlled with medication you don’t need to put yourself at risk with surgery. It’s always dangerous once they start poking holes in your body. I wasn’t an candidate for that anyway because the walls of my heart are not thickened, but I don’t need it now. I have this semi miraculous medication.

@joanallione ce message est tellement plein de positivité et de courage je vous remercie infiniment !! Je vous souhaite de continuer à bien vivre malgré cette maladie et à continuer de profiter… ce genre de témoignage est tellement rassurant même si chaque cas est particulier ❤️ prenez soin de vous ☺️

@mshcm I forgot to add that I have twins who are now 35 years old and they both had an exercise test test and an ECHO for a baseline with their hearts. I wanted them to have knowledge of any heart issues long before i learned of mine. Our children have a 50% chance of having HCOM, so they need to be monitored. Also, they both run marathons. Knowledge is power.

Thank you for your kind message which is absolute truth. Positivity and gratefulness are essential for living this life. JOY!

@mshcm you are welcome. I definitely remember when I got my diagnosis in the first months and how frightening it was and also I was having a lot of reactions in my heart would suddenly start beating faster and I’d be up in the middle of the night and I was going to the hospital in the middle of the night, etc. before I got the medication figured out. Happy that we have a place we can communicate and share these experiences because they are really unique to those of us with HOCM.

@whidbey je ne veux pas être indiscrète mais est ce que tes jumeaux ont hérité de la maladie ? Car mon fils de 18 ans se dirige actuellement vers une carrière de footballeur professionnel je n ai pas encore fait les examens pour déterminer si il a cette maladie ou non mais j ai très peur de cela …