Is there any where in Georgia for adults who were born with CDH for adult care and is there any adults who still have or have had repeated surgeries I am looking for any information I can to better understand my own condition to better help my providers help me thank you for any information you can give

Originally Posted by VirginiaP

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

Hello this is day 1 for me on here I stumbled across this website while trying to get all of my medical records together for my next surgery I was born on Aug 20th 1979 with a Congenital Diaphragmatic Hernia on the left side as you all know what that means I had my first surgery at Columbus Medical center in Georgia at 2 hours old my left lung was punctured and of course fixed the right lung was a resection and I had like many of you guys pins and surgical sutures to put the puzzle back together.In April of 1992 my Appendectomy went a little sour the first attempt was with laproscopic below the belly button and tethering adhesions ended that quickly I was again cut down the midline of the abdomen and my appendex was attached to the liver wall it took over 9 hours to get to my intestines and other valuable parts untangled from the adhesions and my small intestines was nicked accidentally and I got an extra whole for a backers tube I got to keep for a few weeks. Since then I've started losing blood threw my stool I have barrettes,Large Esophageal Ulcers, Acute and Chronic ulcerative and Chronic Esophagitis,Mild Chronic Antritis hyper plastic polyps threw out my bottom to my throat and something called Congestive pelvic syndrome and trace free fluid I also have a hiatal hernia that's at the diaphragm again as well as tethering adhesions in my left and right upper quadrants and around the colon/intestines on the left side again I've lost about 30 pounds I throw up a lot if I bend over and my chest fillbs full all the time I also have a degenerative developmental verses thicking of a ligamentum flavum my spine curves leftward from birth obviously something called varies of pelvic vasculture and yes of course it would not be complete without sharply angulated hepatic flexure that suggests abdominal adhesions/Diverticulosis coli. in the sigmoid colon.I'm about to go for my 3rd abdominal Surgery I wanted to know if anyone else has these issues as well I have a large scar going across the abdomen and one straight down the abdomen I have a hole where my bakers tube was placed I have scars bilateral on the outside of my rib cages I also have a scare on each of the inside of my ankles. I just need to know what happened before my mom comes to help take care of my for my next surgery and is there anyone out there Any information anyone could help with would be great thank you all
you are all in my thoughts and prayers

Ohhhhhhh 1 more thing:The doctors were unsure if I would be able to carry and deliver my own child but I did my husband and I have two beautiful daughters