Diagnosed as an adult

[Sara F.]

Hi - looking to talk to anyone else who was diagnosed as an adult. I recently turned 45 and the same week was diagnosed with a morgagni hernia. I'm feeling pretty lost right now! Doesn't seem to be many of us out there. I've met a few on the facebook groups. My main issue right now is trying to find a doctor. I live in the Philadelphia, PA area and I thought with all the great hospitals here it would be easy. But, I'm finding that not to be the case.

If anyone has any recommendations in or near Philadelphia (or even close cities/states) for a doctor who is experienced in adult CDH, please let me know.

Thanks!

Sara F.

[VCouch]

Hi Sara - We FB met and I know you are preparing for surgery soon. I was diagnosed at 47 (after being hospitalized for the 10th time with pneumonia), but did not have the repair surgery until I was 53 (two years ago in 2016). I am 55 now. I might not be a wealth of information, but I can possibly tell you what to expect and answer questions since I just went through it. I am in Atlanta and my surgeon is a thoracic specialist. He never told me how many surgeries he had completed successfully and repaired CDH's, but had a confidence about him. My family and I researched everything we could find on him. He was the only one in our general area that was labeled the best and referred by my lung doctor (who I adore). It took two months from the time I saw him until I had the surgery. I had to have weeks and weeks of testing and barium CT's, echos, nuclear stress test. Dr. K wanted to attempt the Davinci surgery and I signed on the dotted line. Davinci was a no go after he had the instruments in place because I had too much small bowel in my chest. So, it ended up as an open surgery. I was able to come off the vent fairly easily after being on O2 for an extended time. I was told to expect to be on the vent a few days and that didn't happen. I was also told to expect two days in ICU and two days in a regular room, but that didn't happen either. I was home in two days, no ICU. Blessings! I stayed on O2 for a few months after my surgery until my right lung expanded and I got happy numbers. I feel really good today. A few helpful hints before you have surgery...have a great recliner in your home that you can sleep in, laying down is tough. I bought an incline pillow form and that helped after two weeks in the recliner. The more you move after your surgery the better, truly. I am on FB, so please feel free to message me. I will pray for health and a speedy recovery for you!

[Katey C]

Hello 👋.
I'm got diagnosed with Morgagni at 47.
Would love too have contact with you both.