I hit a wall with Hypertrophic Cardiomyothopthy nothing working

Posted by holly1275 @holly1275, Sep 18 6:49pm

Hello
I was wondering has anybody had trouble taking medications ?
It seems like every medication I've tried it doesn't work, I had surgery 11 months ago but according to my Dr my Echo is 46 mm hg at rest and 120 mm hg with Valsva Dr says Mild to moderate Camzyos is one medication I can't take.

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Profile picture for deniseinflight @deniseinflight

@brumasterj I am so glad that your myectomy went well. I am hoping to have mine at the end of October and have been interested in the recovery process and duration...three months sounds hopeful to me. I am really curious about arm mobility, how much do we have in the first few weeks? And how long until full mobility? I am trying to plan ahead. Any advise would be appreciated!

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@deniseinflight Others (@brumasterj and @baystater101) gave solid advice and rightfully pointed out that we are all different. Starting the day after surgery there was OT and PT. Eight days after surgery in 2022 at age almost-76 I was walking up and down our long driveway several times a day and around the block slowly soon after. I was cooking - hubby lifted anything too heavy - and a few other light chores, too. I was told to pretend that I had my upper arms in a cylinder, my lower arms did all the work. I was to start cardio rehab 2 weeks after surgery, but no appointments available for 6 weeks. The owners of the gym I belong to had worked at cardio rehab and they were able to get me going on that - without the heart monitor - by the time I did go, I was easily walking 3.1 mph on the treadmill for 30 minutes. Much will depend on your initial fitness, if you can get the OK from your doctor, it will be helpful to work on core strength before surgery. Yes, there were restrictions on lifting, NO DRIVING for 4 weeks - one should listen to both your doctor and your body.

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Profile picture for walkinggirl @walkinggirl

@deniseinflight Others (@brumasterj and @baystater101) gave solid advice and rightfully pointed out that we are all different. Starting the day after surgery there was OT and PT. Eight days after surgery in 2022 at age almost-76 I was walking up and down our long driveway several times a day and around the block slowly soon after. I was cooking - hubby lifted anything too heavy - and a few other light chores, too. I was told to pretend that I had my upper arms in a cylinder, my lower arms did all the work. I was to start cardio rehab 2 weeks after surgery, but no appointments available for 6 weeks. The owners of the gym I belong to had worked at cardio rehab and they were able to get me going on that - without the heart monitor - by the time I did go, I was easily walking 3.1 mph on the treadmill for 30 minutes. Much will depend on your initial fitness, if you can get the OK from your doctor, it will be helpful to work on core strength before surgery. Yes, there were restrictions on lifting, NO DRIVING for 4 weeks - one should listen to both your doctor and your body.

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@walkinggirl Thank you so much, this is exactly the type of information I was looking for. I think the idea of being immobilized for a long period of time was frightening but you seem to have been out walking quickly, which is really important to me. I am assuming that if you were able to drive after 4 weeks, that your "arms in a cylinder" had lifted to at least your steering wheel, if not actual heavy lifting. There was so much hope of a good recovery in your message. Thank you, again! (And, yes, I know we will all be different, but it sounded really, really good to me.)

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Oh, the arms in the cylinder thing was over in about a couple of weeks. Had to do that bicycle pedal with the arms machine at the gym - slowly. They want you to walk the day after surgery to get your circulation going, your muscles in shape and to prevent blood clots. We drove home from Rochester MN to north of Albany, NY and stopped every 90 minutes to 2 hours at rest areas. They wanted me to use a walker, many don't, if you can borrow one to have handy just in case, won't have to purchase it if it is suggested. I felt more secure at the rest areas and when I was home outside. YES! Many in this blog can attest to generally good recoveries, our differences are interesting, and it just takes time!

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Profile picture for deniseinflight @deniseinflight

@brumasterj I am so glad that your myectomy went well. I am hoping to have mine at the end of October and have been interested in the recovery process and duration...three months sounds hopeful to me. I am really curious about arm mobility, how much do we have in the first few weeks? And how long until full mobility? I am trying to plan ahead. Any advise would be appreciated!

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@deniseinflight i think the recovery will be a little different for everyone but the pain is bearable i never took any hard medicine after my second day in the hospital! Im very active 57 year old so i think my muscle mass may have hindered some of the healing! I could bench over 300 before my surgery! Now i have not even attempted a single pushup:(
4 weeks hurting getting in and out of bed, lifting with arms forget about it, keep it close to your chest when lifting anything and use ykur legs,
Im 3 months out and still struggle lifting anything with just my arms!
Listen to your body and you will be extremely tired just doing simple tasks for the first 6 weeks

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Profile picture for rebaheizer @rebaheizer

@brumasterj
At what point do they recommend surgery? I have HOCM and have taken Camzyos for three months. My third echo shows a reduction of ef so they stopped medication for a month until another echo.
Will continue med at a reduced dose if I rebound. But what if I don’t?

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@rebaheizer i really believe thats all different for everyone?
My EF was always good but my gradient resting was 48 Hg and valsalva was 122
So because of my active life style surgery was recommended:)
I hope that helped answer your question:)

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