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Sounds like we have had a lot of the same path leading into this.
What is your resting gradient?
Mine was 48mmHg
Now its 10 with camzyos
I was told that HCM is what you hear of young football players and basketball players dyeing from!
I played contact sports and remember my heart racing away for hours and would never tell anyone for fear of not playing!
Symptoms i had early on too was after eating a meal i could not go exercise at all in fact if i knew i was going on a bike ride i would not eat till afterwards!
Drinking a beer and trying to do work around the house would not happen either!
Walking up hill after a meal or after drinking was challenging as well!
I would highly suggest going to mayo or big teaching hospital about your conditions!
I was told that there is only a handful of surgeons that can do this surgery effectively and two of those surgeons are at rochester.
My hospital tries metropolol and verapamil on me after my heart failure neither one worked!
Not sure if i mentioned this earlier but my mayo doctor said i had had several heart failures, basically every time i was having issues with my workouts was a heart failure which is the hearts inability to move enough blood thru the body!
Talk to your dr about camzyos vs surgery
Also HCM is considered to be genetic so Mayo will do a genetic testing as well
This may qualify your first line for genetic testing to see if they have the gene
Camzyos has been proven to keep people from having surgery.
The protocol to stay on camzyos is huge!
1st 3 months echo each month
If you do well then they move it to echo each qtr for 1 year
If you still do well they do echo twice per year!
Its expensive for me to drive to phoenix every month 450 miles 1 way stay 1-2 nights in hotel then drive back home!
Plus camzyos is expensive
$9000 per month
But mayo helps find ways to make it affordable
My insurance picks up $8800 per month dollars and camzyos gives you a copay card where they pick up $90
So i pay $10
In my case camzyos has given me my life back while awaiting surgery!
Dont hesitate to reach out for more questions
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Wow, thanks for the extra info. My resting gradient is 50mmHg, from the echo before the stress echo, and they want me below 50mmHg when exercising, so I'm already in the range of needing some sort of further intervention.
I was told the same thing about young athletes and I was involved in activities for hours on end in the summer heat that make me surprised I didn't know about this earlier.
My most recent noticeable symptom that just started is I get a little winded walking up two flights of stairs at my gym. I never did before and that has been noticeable the last month. I don't have stairs in my house, but I always walk up those stairs and a stair master machine and never felt winded like that. Chest tightness once in a while and feeling of palpitation once in a while. The 30 day heart monitor hasn't displayed any issues though with those symptoms but that was a year ago. I'm now on a 14 day monitor right now after some chest tightness last week and a visit to the ER to make sure nothing bad was happening.
Kaiser has been pretty good with the diagnostic portion of this whole thing (echo when murmur was found--without question, cardiologist followups, heart monitor, medication, genetic testing, and echos for my kids). All of this was covered and happened pretty quickly without any pushback.
Kaiser told me that they have two surgeons in Northern California that do the procedure, but I have a lot of questions (thankfully from reading through this group) that I am asking. If I'm not comfortable with their expertise, I will need to build a case on why I need to go to Mayo. It may be an uphill battle but since it's not urgent right now, I'm getting second opinions, talking to their surgeons, and getting my paperwork in order. Realistically, they don't specialize in HOCM or septal myectomy so I'm certain I want to explore outside options. I have an excellent Primary Care Physician who has been going to bat for me all along and I hope he will help me through that process.
My cardiologist did talk to me about Camzyos and Kaiser is part of the program to prescribe. Since I'm not very symptomatic though, we talked about all the related expense and follow up echos, etc. He didn't seem to think that med was the best option for me at this time, but was something to consider.
Sounds like you're getting pre-op care in Phoenix and then surgery in Rochester?
I'm glad that camzyos is giving you your life back while you're waiting for surgery and that you're getting the help needed from such a great providers.
I'm really in a phase of wanting to get this taken care of before any major symptoms occur. My cardiologist basically told me more symptoms will very likely happen at some point, it's just a question of when within the next 10 years, unless a major episode happens beforehand. I'm super proactive with my health and hyper aware of feeling things (that's how I caught the sepsis I had hours before the hospital--they sent me home and I was back a few hours later back in November).
Your story hits home with me because it does give a perspective of what could happen waiting 10 years or so--though I know everyone's progression and journey is completely different.