HCM-ers: Introduce yourself or just say hi

Hi, I am 4 1/2 months post septal myectomy done in Vancouver BC by a surgeon trained at Mayo Clinic. I was diagnosed 2 1/2 years ago and found it traumatizing. I am very active and couldn’t absorb there was something wrong with my heart of all things. So had to stop cycling, kayaking, horseback, cut down on weights and avoid walking hills. Kept up walking, yoga and light weights until surgery to stay fit.
After surgery, there were moments I felt too weak to even move a hand. My 91 year old mother would take my arm to help me walk. I was able to do self-care and light chores most days but gaining strength and endurance was difficult and took discipline. Activities I normally enjoy were a test of determination but I felt the only way to progress was to keep doing them.
Two months after surgery I was discouraged, thinking I should be more advanced and tired of feeling like my body was somebody else’s, not working properly. My GP said I would really start to improve in the next 2 months and she was right. Starting back on weights and yoga recently was humorous, just so weak and literally shaking. But persevered and now am close to my usual routine. Today I enjoyed yoga for the first time. It wasn’t just a struggle to get to the end. Went up 6 flights of stairs cautiously but with ease.
I still have palpitations so not all I had hoped for but the stamina is amazing. Looking back I realize stamina had gradually been eroded for quite some time.
My message is that despite being fit, the surgery was more difficult than I realized to bounce back from. I felt like I had been transplanted into someone else’s body for a few months. Perseverance, time and an understanding partner were key to gradual progress in regaining strength, endurance and flexibility. It is exciting when it starts to happen.
We worked up to walking at least 10,000 steps most days. Really recommend increasing the walking as you are medically able.
To anyone who likes being active, I hope my experience will be helpful to you.

Hi everybody
I have been diagnosed with HCM for 23 years now...I have been put on an peacemaker...and everything went relatively smoothly...however, for some months now I have a lot of pvc
..that they have tired me ...and even though I am passing sotalol
..they have decreased a bit....I'm sad...
you had a problem with pvc....what did you do? when will they go away? or will I have gone by morning...to heaven? 🙂

Soooooo, is bad smelling urine a sign that this drug is wrecking my kidneys??
I will monitor this in case it was just something I ate or drank ( maybe the vitamin water I had ) ??

Don't hesitate to ask away! If even one little tiny tip I can share helps you, or anyone else who may be reading this...I am so happy to do so! I hope you keep me posted!

No, I didn’t notice any difference.

It did provide much relief BUT the side effects of Camzyos (dizziness, head spinning, feeling sluggish) were the same symptoms I had before Camzyos. So a life of my heart being better but never getting to reap the benefits due to Camzyos side effects made me decide to just do the surgery.
That and the unknown long term effects of the Camzyos. Not knowing of it will later on give me liver or kidneys issues to deal with too

That’s exactly the info I was looking for! Thank you for telling me that. I feel I can deal with things better when I have an idea of what to expect. Thanks again!

Thank you for your quick reply. Much appreciated. Wishing you a good recovery!
I’m guessing Camzyos did not provide relief.

I know this is probably not serious but,
has anyone noticed bad smelling urine after taking these for the first three days?

Hi @tjunca, I wondered the same thing. We are all different and no two people will have the same recovery. That being said...I was told it would be difficult to raise your arms up to pull on a shirt over your head. That was true, but only for maybe a week. I was able to pull a t-shirt on, just really slooooow, the day I went home. It just feels uncomfortable. They don't want you using your arms much, and lifting anything over ten pounds is a no-no for at least 4-6 weeks. The sternum needs to rest and heal, and if you are one of those people who think it's okay to do whatever you want, you could end up with a gnarly looking scar! I know someone this happened to, and she was not happy about it. It stays like that the rest of your life. So protect your sternum is the mantra to say to yourself over and over.