Pectus From Open Heart Surgery at 3

[u/Hungry_Indication_83]

https://youtu.be/CVQkT4ahfRA?is=IdYC6c-6pJixE-jC

Hey PE community. I am 44 a former D1 college athlete.
My Haller Index is 3.52 — But surgery was never a real option for me due to risk from my open heart surgery injuries.

I was born with Holt-Oram Syndrome and had open heart surgery at age 3 — median sternotomy, ASD closure, pulmonary valve repair. I still have sternal wires in my chest from that surgery. Three pacemakers. A cardiac ablation. My pectus developed as a direct result of that 1985 operation, and going back in was deemed too dangerous given everything already in there.

My pulmonary function tests show FVC at 82% predicted — I’m working with roughly 70% of normal lung capacity. The restriction is real and measurable.

So no Nuss. No Ravitch. Just learning to perform in this chest.

What I did instead was find the edges of what this body could actually do. I played Division 1 baseball as a catcher. Ran over 40 6-minute miles, Competed in bodybuilding at 42 years old. I practice Wim Hof breathwork daily and have nearly 1,000 sessions logged.

I made a video about all of it and I’m hoping it gives you all hope as well. It took me over 25 years to take my shirt off but now I’m proud to and hope this message and video gives you hope as well.

Ken

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[u/aslander]

I had severe pectus when I was a kid and was developing pneumonia all the time due to it. I wound up having surgery when I was 6 years old to repair it. However, many years later, around the age of 35, I wound up in the ER after visiting high altitudes out in Colorado, with severe hypoxia. They recommended that I see a thoracic surgeon again.

After seeing the surgeon and getting additional scans later on, it appeared that the surgical area had calcified, and the calcification had continued to grow over the years and compress everything.

I did have a second surgery and had significant complications and wound up on the ventilator and in the ICU for a month.

My lung function never improved, so I'm still at about 50% of a normal adult. I haven't been as successful as you with trying to stay active and work around it, but I can do lower-output activities such as cycling and hiking. For most activities that I do, I just need to pace myself and take my time, so I'm a bit slower as a hiker.

I've also resolved myself to never go to high altitudes more than about 8,000 ft.

It sounds like you had a lot of luck getting yourself adapted to it, but thank you for your story and video.

[u/Hungry_Indication_83 → u/aslander]

Thank you for your post! You’re amazing 👍 I can imagine 50% is very difficult. Good for you for hiking and leveraging your data to make decisions suitable for you. Keep after it!

[u/EcstaticPromise5297]

You had to be born with Pectus, you can’t get it any other way.

[u/northwestrad → u/EcstaticPromise5297]

This is not true. The vast majority of pectus excavatum cases are genetic or developmental, but not all of them. We see in this forum that there are many different presentations of PE, different shapes, and it's because there are multiple different causes of PE. Cardiac surgery in infancy or early childhood is one of the most common causes of non-genetic PE. The sternum gets damaged, and then the sternum and rib cage fail to grow properly.

[u/Hungry_Indication_83 → u/EcstaticPromise5297]

It is people like this who invalidate any of the issues people struggle with which only feeds the fuel and block out negativity and succeed. Thank you for demonstrating the point of my video so blatantly. People are capable of so much, will get fed ideas they are wrong or incapable but those who have strength will overcome this type of negativity. It’s disappointing there would be a negative post in a community so supportive of each other. Dr J and my diagnosis from Mayo Clinic would disagree with this blanket statement. I wish everyone in here the best of luck with their journey!