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VirginiaP

Adult CDH Clinic Required (Multdisciplinary)

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Quote Originally Posted by VirginiaP View Post
Hi I am a 35 year old survivor and I find that Amy is correctabout physicias not understanding until they have exasperated every other test they can. I'm sure it's hard for the doctors but it's hard for us to have a normal life until we have been repaired again I sometimes feel like a robot lol but let me encourage everyone please please get your child's surgical notes get all your child's medical records I don't have mine my parents back then no one knew what a L CDH was hardly it's so uncommon even today I have scars from birth that I am unable to explain the most important thing that anyone can do is get your medical notes post operative notes are the most important thing you can have because we didn't have mine my surgery at 12 was a lot harder for my surgeon to help me and again I'm going for another surgery and I don't have everything we need to help my surgeon again so please I'm in tears just writing this to everyone God please get those notes
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