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Author: Subject: Introduction/Acquired Restrictive Thoracic Dystrophy
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[*] posted on 4-7-2017 at 03:51 PM
Introduction/Acquired Restrictive Thoracic Dystrophy

Hi Everyone,

This PE message board rocks. I feel like I've finally found my peeps. :)

Here's my story thus far...

At 4 years old I had 2/3 removal of my right lung due to a congenital deformity. It was called sequestered lung syndrome, and basically it was getting infected regularly, so out it came. While I was at UCLA recovering from this surgery, the surgeon suggested my parents also address the cosmetic fix of my PE. After what I'm sure was a very challenging decision, they agreed that it would be best for me to go through life without ridicule, so I had the surgery. I only have a few memories of the recovery. Maybe that's a good thing!

All my life I can only remember struggling with exercise. Every doctor I saw said it was in my head because the existing partial lung would have expanded to fill the space. When I was 18 one doctor even said I wasn't trying hard enough when she had my use a spirometer. She basically kicked my out of her office. Ay ay ay. Even though I mentioned the PE surgery every single time, no one ever mentioned that could contribute to my breathing struggles.

It wasn't until now (at 48) that a doctor finally ordered a CT scan. My Haller Index on inhalation is 5.5. Between scar tissue in my right lung and my heart being pushed into my left, my gas exchange is only 32%.

After learning that Dr. J no longer performs surgery with patients with my history, I went to see Dr. Lee at UCLA. He noticed my rib cage is tiny (I'm certain it is due to my early surgery), I have slight PE with some scar tissue behind the sternum, and my spine is pushing inward. My heart and lungs are being squeezed from all sides. He says he wouldn't do the surgery, be cause the sternum is pretty close to straight. The improvement would only be slight and not worth the risk.

Other than that, I'm a super healthy life-loving person who just wants to breathe! My exercise tolerance is getting worse and worse. I used to be a personal chef, but now even the thought of lugging bags of groceries and cooking gear exhausts me. Now a walk around the block or two is about all I can do.

I'm grappling with accepting that this is just how life has to be and searching for a solution. I really want to be hopeful, but the last month has been a roller coaster of emotion. I feel like Dr. Lee saying surgery is a bad idea, and Dr. J no longer doing this type is sign that all roads to help are dead ends.

If anyone has any suggestions about who next to contact, bring it! I've heard of Dr. Lasasso. Anyone have experience with him doing a complicated Acquired Restrictive Thoracic Dystrophy? And what about John Hopkins?

THANK YOU to everyone one here who shares their stories. You are not alone.
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[*] posted on 8-22-2017 at 10:08 AM

Hi harmony, My son also had a Ravitch surgery at UCLA at a young age and now also suffers from Acquired Thoracic Dystrophy. I've sent you a U2U. ginmom
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