HCM-ers: Introduce yourself or just say hi

Hello All,

My mother is 83 and has had undiagnosed HCM for her entire life (as I'm sure is the case for most people with HCM). About 10 years ago she started showing symptoms of being short of breath and had decreased energy. These symptoms continued to become more severe. It wasn't until about 3 years ago that a doctor took her seriously enough to do in-depth testing and she was finally able to receive the diagnosis of HCM.

I have joined this forum because my mother was recently hospitalised, and was very close to death due to undiagnoised Atrial Fibrillation (AFIB). I could go into all of the details of her total of about 30 days in and out of the hospital since the last week of November, but she is now home and doing 'OK'.

For my questions, I will post them each separately to make is easier to follow the forum comment threads for each topic.

Greetings to all. I’m still trying to find someone who has had a TKR while on Camzyos. In my rural neck of the woods the doctors have not heard of this drug and our cardiologists are completely overwhelmed due to short staffing. I’m most concerned that the anesthesiologist knows there are certain drugs that are contraindicated to Camzyos, including commonly used anesthetic drug. Thank you for any tips on how to navigate this.

Thanks Debra for your thoughtful and kind reply! So nice to talk to someone else who has experienced HOCM. Yes, bending over to tie shoes and tachycardia happened to me too. (Helped to squat down rather than bend over.)
As you said, my main hope by posting was to help others with what they are going through before or after surgery. I know what it felt like to feel “adrift” as it was all so unfamiliar.
It is so encouraging to think one might keep improving for a year! Wow, thanks for sharing that. 😊
I am on Bisoprolol for palpitations.
Thanks again for your response and being a volunteer mentor!

Happy New Year and a big Welcome to Mayo Connect @erica8082!
Thank you for sharing your story with the Hypertrophic group. Your determination and perseverance and refusal to give up certainly helped you regain your life. And time too, of course!
We are all so different and no two will have the same outcomes. I was a lot like you before I had surgery. I was super active and was so depressed about what HOCM had taken from me. It was so hard to understand how this ridiculous heart disease could rob me of all I loved to do. I would laugh, but not because it was funny, at how just bending over to tie my shoes would put me into tachycardia and I'd be gasping for air.
My recovery was not as terrible as yours. I'm sorry you had to go through all that for as long as you did. But you made it back and you are here on Connect to give hope to others! So thank you again for sharing. 4 1/2 months is not that long ago. I was told it can take almost a year for the heart to completely heal from the inside...so you may be even more happy further down the road at what you can accomplish with your heart all patched up and ready to go!
You are right about getting out and walking as much as you can as soon as you can. Good advice! Are you on meds for the palpitations?

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