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jekcordle avatar

Would Cardio Rehab Help?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Nov 3 2:18pm | Replies (4)

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Profile picture for Debra, Volunteer Mentor @karukgirl

https://www.mayoclinicproceedings.org/article/S0025-6196(24)00357-4/fulltext
Hey @jekcordle, check out the link above.
It is really loaded with great information.
In my opinion, which is non-medical and only based on my own journey, cardiac rehab would be used for after you have had open heart surgery.

The article I posted shares the weirdness of this particular condition that baffled a lot of us. But as HCM and HOCM has become diagnosed more frequently it now makes sense.
I could NOT understand why certain days I could run and power-walk six miles, and the next day...same trail, I had to stop 12 times.
On FLAT ground!
In the first mile!
It made no sense.
Heart pounding. Racing. Gasping for air. Chest pain. Neck pain. Am I having a heart attack??? I think I am!

Thinking it was in my head, I pushed myself to go everyday anyway regardless. Sometimes I was rewarded with an awesome time. Sometimes I had to stop and go back.

The experts now agree that the old standard of limiting exercise in patients with HCM is no longer the standard. It is based on each person ability. They used to caution us to not do weight lifting, strenuous sports etc for fear of SCD (the dreaded Sudden Cardiac Death--That'll get your attention!)
That's because young, athletic kids were dying like during basketball or track.
Well, who wants that?
There were days, honestly, that I really believed I was going to die. And days I could run up hills. The fear I lived with was there, but I kept going anyway, knowing walking was beneficial.
I'm not saying go out and run up hills!
No! I'm saying, keep learning, reading, absorbing all you can about your new diagnosis and get yourself to an expert in this weird thing!
For me, the Mayo Clinic was the expert I landed on. I went to another COE, Cedars-Saini, as well, but the Mayo Clinic did two simple, simple tests no other facility had done.
Are you ready?
They ordered a lab and a chest x-ray.
The lab (pro-BNP) and the x-ray told the story. My heart was enlarged, and failing. The Pro-BNP was very elevated. Why I wondered, had no other place done this?

I wasted a lot of time being misdiagnosed. For years. And now, armed with the truth, I was determined to learn as much as I could. Before I had open heart surgery!
The progression from okay, to not okay, to severe was pretty short. I knew something was wrong. But I didn't want my Tombstone to read: "I Told You I Was Sick!" and they still didn't know.

So, your trouble with exercise is common, as common is in this process.
Did I mention there were days I honestly thought I wasn't going to make it?
Keep going! Learn! Trust your instincts. Find a COE and an expert to treat you.
You are already here on Connect, and that is a blessing to you. Read the stories here. You will be so inspired.
Have you had a chance to read some of our stories here?

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Replies to "https://www.mayoclinicproceedings.org/article/S0025-6196(24)00357-4/fulltext Hey @jekcordle, check out the link above. It is really loaded with great information. In..."

@karukgirl thank you, thank you, thank you. I don’t want to be a bother asking all these questions but until I get connected to a center I am overwhelmed with questions. It seems when one question is answered another 10 are added to my list.

I am grateful for the fairly quick diagnosis based on what others have gone through. My issue is they have said you have HCM and here’s a quick explanation of it but that’s it. So I am definitely going to find a center. Again thank you for answering.

P.S., I am learning each day is a new day and to do what I can knowing I will have better days and days that knock me on my butt.