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What I Learned From My Open Heart Surgery
Hypertrophic Cardiomyopathy (HCM) | Last Active: 2 hours ago | Replies (37)Comment receiving replies
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.
Replies to "Hi Debra Yes I have HOCM. I will be having a septal myectomy and possible valve..."
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You will love Dr. Dearani! He was in on my surgery.
You will be in the best place in the world for this surgery. I could feel it. I knew it. And knowing I was in the best place in the world really helped calm my nerves.
You are the same age as I was when I went through this. I too lost the ability to do most of the things I loved. Hiking. Walking. Ballroom/Swing dance. Riding my Harley. Yoga.
It took almost five years to get the correct diagnosis, and by the time I made it to the Mayo Clinic for my third opinion, my heart was failing and enlarged and I had no life.
I was told that I was also going to have a valve replacement, which surprised me.
But after surgery the doctors told me my HOCM was so severe it made my mitral valve look like it needed to be replaced, but after the obstruction was corrected, my little mitral valve was A-OK. That's just my story, however, and I only shared for FYI reasons 🙂
I am excited for you that in the not to distant future, your life will belong to you again and it will feel like a miracle. Your decision to have open heart surgery shows you are already braver and stronger than you know. It is a very difficult decision to make. And with your physical health being otherwise great...your recovery will be much easier.
I am so glad you found Mayo Connect!