To be perfectly honest it's been my experience that niether a typical GI *nor* a CF GI is at all equipped to manage liver complications, not even those related to CF.
Micah has seen a Heptalogist since he came home. He had only ever seen a CF GI prior to that point, and they completely bungled his care from start to finish. They simply are not trained for the liver. We've been told that 12% of CFers will experience some level of liver disease. However, GIs are not trained properly in the liver per se.
Our center's CF GI just came by to see us today. He can offer suggestions on weight gain, on PI, on short gut and bowel struggles. He has NOTHING to contribute towards the liver issues. And, what he provides for fat soluable vitamins is less than the Heptalogist, because it was finally accepted that the fat soluable vitamin struggles are liver related and not merely CF at this point.
I deeply wish someone had taken Micah to a Heptalogist in the first six years of his life, before he was ours. So much more could have been done for him (including trying to preserve his bowels for tranplant potentially).
Anything that our Heptalogist has needed to refer to the CF team on, he has been able to quite easily. Conversely, the CF team has never ONCE touched Micah without his Heptalogist weighing in. We learned early on that liver trumps EVERYTHING, and you don't need a CF doctor for it but a liver specialist.
