How to decide whether to take Camzyos or have surgery?

@walkinggirl
Thank you, Linda. I am scheduled to see a cardiologist at the HCM center at UTSW in Dallas on June 1. Just hate the waiting!
I've personally decided if the surgery is planned I want to have it done at Rochester.
With my Midwestern roots, I have great trust in Mayo's, plus have family nearby and one who works there. Right now its just the frustration of waiting and getting the process underway.

Has anybody needed a pacemaker after a septal Myectony. I am also contending with Afib…..and was told I will likely need a pacemaker after the myectomy.

@karukgirl I am 72. I don't have severe ohcm but I noticed at 48 yo the shortness of breath ON exertion and how I couldn't do workouts or hikes (steep spott) anymore. I attributed it to getting older. As years went on, I could do things like help clean/paint/remodel rentals. And carry 5 gal buckets of paint. Finally by 67, I finally started really digging into what was wrong. My PCP was no use and didn't ever do PFT for breathing or recommend a cardiologist. I dodged some bullets on the journey and ended up at a COE in Kansas City MO. I am on Myqorzo now, since March. I never got dizzy, chest pain, passing out, etc, so I would say it is not severe. It was ALWAYS the exertion part that got me. My septal thickness is 16mm. I am assuming I just don't meet the criteria for open heart surgery, or even an alcohol ablation (not my first choice imo). The dr did say that on myqorzo, there should be no additional thickening of the heart muscle and that it can improve/remodels the heart muscle. I also read, when you stop myqorzo, within 24 hours the effect reverses. Weird. At the cost of myqorzo at 108,000 a year vs open heart surgery, I don't really see a difference! The first cardiologist bunch I saw couldn't even diagnose the OHCM even after I asked the nurse about additional testing for more info. (since my problem started at age 42, I wanted to get to the root of it all) She said if the dr thought I needed them, he would have ordered them! Four of the geniuses discussed my results and flipped a coin between mitral valve replacement or a pacemaker. I got the pacemaker. They said chronotropic incompetence. Long story on that. Do patients not get a say on how OHCM is treated? I am tolerating myqorzo at 5mg ok so far but dr wants to increase it already. We changed metapropol from 100mg down to 50 mg bc of fatigue side effect. I said to just change 1 thing at a time. I know St. Lukes is an excellent med center and excellent reputation. I used to be able to power up steep little trails in my day! I tend to ramble. I am 73 in August and relatively healthy.

@doctorboo1 I just thought of this: You have online records - My Chart/EPIC - and I think that if you self-refer to Mayo in Rochester, it would be beneficial to note that as a part of your request. I am unsure of the access/privacy rules related to access a person's My Chart.

Hi. I'm 70 and have had symptoms of HCM since birth (a very long and winding road). I was approached about septal myectomy at Mayo in 2009 and again in 2014. I declined as my condition was managable with meds at the time and lifestyle changes. I lived alone and was hesitant to undergo the rehabilitaton needed with open heart surgery. I started on Camzyos in 2022 within months of it being FDA approved and had dramatic positive impact within a few days. My NYHA classification dropped from III to II, I was much less short of breath, fewer palpitations, improved circulation and a hopeful attitude people in my life took notice. I felt renewed!! In the last few years I've had arrhythmia problems to manage while remaining on 2.5 mg/day of Camzyos and am glad I did not have surgery.

My opinion is that surgery is doable if the medication does not work; close monitoring will enable you to know that quickly. I also believe surgery is a preferred approach for younger people who do not want to be in a liftime of medication. The rigors of open heart surgery at this age are also a consideration. Best to ask around as to other's experience and wish you the best of good health.

@walkinggirl Thanks for your thoughts. My Chart allows me to send my records to any hospital i want so have plans to send them to Mayos.
Have looked through doctors at Mayos and wondered if you just picked someone or whether your regular cardiologist set it up.
2 guys were listed for me to see, but neither one had significant credentials or do the surgery. How did you handle that?
I've had the same issue at UTSW just being assigned to somebody who happens to be in the HCM unit, but apparently not a specialist in the disorder.

@doctorboo1 My cardiologist referred me. All of my tests and maybe notes were sent to Mayo. I believe there is a a HCM group in the cardiology department. I was accepted as a patient within a couple of weeks and given a patient number and invited to set up a patient portal. That was Feb-March 2022. In March I was given a phone appointment in May with Dr Eleid. Then my surgery was scheduled for Thursday July 21st after 2 days of tests and interviews on Tuesday and Wednesday. My surgeon was Dr Schaff, many others on Connect mention Dr Dearani. I did not know who would be performing the surgery until a couple of weeks before when I was sent the busy schedule for Tuesday and Wednesday. All those who perform septal myectomies at Mayo are the best. That is how it happened for me. One must be an active advocate for themselves and be a squeaky wheel needing grease.

I encourage you to keep asking questions; I'm sure you will make the right decision. To clarify, I have had atrial fibrillation since 2019 (a not uncommon problem for those of us with HCM) and there's no evidence Camzyos has worsened or improved my bouts with afib. After learning all that we can, it's difficult to know what's causing what at times. I wish you all the best.