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What I Learned From My Open Heart Surgery
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 19 10:47pm | Replies (49)Comment receiving replies
Thank you @deanr for your kind words. It really is helpful to read about other people's stories, and you are so right...no two are alike because no two people are alike!
I would be very excited to know that your symptoms will be (mostly) alleviated too!
It truly was like a miracle to me to get my life back. I still have HCM, because it will never go away, but the obstruction is gone and along with it, most all my symptoms.
The back pain.
Oh.
It was a real thing for me. It is not like low back pain at all.
Not even close.
It is entirely something different. I was told it is because of the torque that is placed on the spine when the chest is opened. It's pretty graphic to picture, but I have worked in hospitals for over 40 years and was not put off by the technique. I even watched a YouTube of my surgery. I wanted to know everything.
I had that nagging, relentless back pain for a year. Again...I don't want to scare you. It is what happened to me and not everyone gets this. I have since learned, after my last visit to Mayo a few months ago, that I had healed rib fractures. This is what I attribute my pain to. I had fractures of my ribs in the back. Not fun. At all. And again...not everyone gets this result.
I keep saying it, and I will again...it is totally normal to be scared. Nervous. Anxious. May 16 is next month for goodness sake! You have found this site, and there is some great information on what to expect. I always feel it's better to know than not know what's going to happen. That's just me. Some people just want to get it over with and not know details.
You get to come back here to Connect anytime you want and ask anything you can think of.
Where is your surgery? Is it for HOCM?
Replies to "Thank you @deanr for your kind words. It really is helpful to read about other people's..."
People talk about back pain. I did not experience that at all, I do not know why. My take is that different surgeons may have different techniques (Dr Schaff was my surgeon), or perhaps I have a strong core - back area muscles from my regular visits to the gym. I have been doing exercises like planks, bird dogs, dead bugs, bridges, and crunches at least 3X a week for 10+ years. These are not cardio and I had no breathlessness when doing them.
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Hi Debra
Yes I have HOCM. I will be having a septal myectomy and possible valve repair at Mayo with Dr Dearani. I did a lot of research, AND I have the best PCP in the world- I mean really the best in the world, she met with me multiple times, once on the weekend, she watched videos from HCMA that I sent her, she found the updated 2024 HCM guidelines in the medical literature and helped me to understand what it said, she’s just been really great! I feel very lucky to have such wonderful support.
My story: I teach on a university campus so when I have to walk to my buildings or parking lot etc carrying my backpack with laptop etc I get sob. I was an avid pickleball and volleyball player and started not being to breathe and play like I had previously played and at the same time I was so vey tired. When I found myself taking naps in the evening I knew for sure something was not right. I never have allowed myself to take naps late in the day because it disrupts my nighttime sleep. My cardiologist ( I have HTN) finally sent me for a TEE and I was diagnosed with HCM.
I was told over the phone that HCM/HOCM was my diagnosis and referred to a “heart failure” clinic which just about sent me over the edge. But the clinic docs and staff are really top notch.
I am choosing the surgery because my quality of life is very important to me and I am almost 62. I need to have it now to for the best recovery.
Like a lot of people, the diagnosis makes a lot of sense to me on hindsight. I was always not quite able to keep up with my peers in athletics and the random chest flutters and dizziness make more sense too! I just ignored those symptoms because they were fleeting and random.
So I am looking forward to being able to play the games I love Pickleball and volleyball! It’s my social outlet, my sunshine and outdoors time and my regular exercise. I miss it so much and can’t wait to play regularly again.
I expect to be nervous but I am banking that the benefits will outweigh the few summer months of recovery!
I appreciate all the stories I have read. The more information I have the better prepared I feel. So thank you again for sharing.