HollyCatheryn
New member
I totally concur with the other people who've posted, but I thought this might make our point perfectly clear. The clinic I used to go to (for years) went through a period when we had no CF specialist, we had a pediatric gastrointerologist who saw us. During those several years 3 of my friends had to have G-tubes put in, ports and were in and out of the hospital constantly. One ended up on the transplant list. Another had all of one lung removed and a lobe of the other. We were just pre-teens. Then we got a CF specialist. The one on the list got healthy and came off, we all gained weight, were in the hospital less often. Several were able to have their G-tubes taken out. It makes a huge difference. We were all sick when we were seen by someone who only knew part of the picture and had a read a few articles on CF. When we got someone who only treated CF and had had years of training to do just that, we all got better. Anytime someone, even someone you trust, recommends a drastic procedure, you should get at least one other opinion from someone not in practice with that person - so they are not inclined to agree just to cover each other. Hope you brother can get the help he needs and get well. PS, my daughter has sees a GP, but when he suspected she had serious gut disease, he referred her to a specialist for diagnosis. I asked if he could perform the test and he said he didn't feel confortable getting into something that specific and wasn't equipped properly. That is what your brother should be hearing from his doc. It is especially suspicious that this doc discouraged him openly from investigating and taking responsibility.