Since doctors were not helping me and I had largely been on my own in dealing with my health already, I continued working on the problem myself. I gradually got healthier by throwing out all my worldly possessions in order to break the cycle of contamination (this piece is heavily objected to by other folks who are dying of cystic fibrosis) and I did enormous research into what nutritional deficiencies I had, how to effectively treat them, and so on. I made drastic dietary and lifestyle changes.
I have a diagnosis of a genetic disorder with a life expectancy of around 36 or 37. I will be 46 in one month. (I sometimes joke that 'in human terms, I'm the equivalent of an octogenarian'.) People routinely think I am in my thirties and I am healthier than I have ever been. I live without a car and me and my oldest son (who has the same diagnosis) walked 8 miles both yesterday and the day before to further the healing process. It isn't news that exercise, eating right and so on can delay the aging process and is generally good for one's health. Most people don't bother to explore the degree to which that can now be leveraged with the vast amounts of information readily available online.
Peace.
PS: There is a website, though that might die when my web-hosting expires later this month (I'm broke and don't know how to pay for it). For now, it's here: http://healthgazelle.com/