I had CF clinic yesterday at UC Davis and discussed the possibility of transferring my transplant care over to a different hospital than UCSF. Once I mentioned my concerns to my social worker, she went and talked to my doctors. Both of my doctors came in together and pulled up x-rays, culture/biopsy results, and a graph of the past 2 years worth of PFTs (pulmonary function tests). The graph showed exactly what I've been trying to tell them (and UCSF) for the past 2 years... A very steady, scary decline from 80% down to 38%. Unfortunately whenever I would point out a decline in clinic, they would just compare it to the previous visit, missing the full picture. When looking at the 2 yr graph, it's hard to ignore the alarming decline of lung function. The problem is, nothing is giving us a hard answer as to what is causing my lungs to be declining so much. Of course biopsies only show rejection of the large airways (acute rejection), which leaves a possibility of rejection of the small airways (chronic rejection).
So my docs want to admit me for a week starting July 5th to run some extensive testing to rule out some things, while trying to figure out exactly what's going on. If I understand correctly, if absolutely everything else is ruled out, they are going to assume it's chronic rejection and hopefully treat me accordingly.
I asked them if they felt the are capable of treating me if it is rejection and they said they are and that they have experience with it, so I'm willing to give them a few months to figure out what's going on and start treating me. If I don't see any signs of improvement in that time, I'm going to look into transferring my transplant care to Stanford hospital. I really trust and respect my CF doctors and want to believe they can be my sole physicians for both CF AND transplant, but my only concern is their experience working with transplant rejection and their knowledge of the newest treatments.
I should have access to the internet (although limited) while I'm in the hospital, so I'll try and update as I can.