The be-all and end-all?

I'm learning a lot about transplantation lately. Mostly I mean organ transplantation as the hospital where I work resuscitates a program and I find myself having to send more and more of my patients to them. It a bit of a crazy business - particularly in the area I deal with most. Lung transplantation that is. I find myself sending people all over the country in search of a program that will "have them." I, and more importantly, my patients, are caught in this insane vortex of transplant programs trying to optimize their statistics (i.e., have no "bad outcomes") for fear of being run out of business and insurance companies trying hard not to pay for them. Nobody, it seems, but me and my patient want the transplant to actually occur.

To add even more complexity, the guidelines for lung transplantation aren't very standardized. In other words, patients who are rejected at one center may be acceptable at another. But which program? What are the parameters for disqualification? Is it the day of the week? Who's on call that week? Is the decision made by an individual? A committee? A coordinator? Who knows??

We, as the patients advocate, are rolling the dice and our patient is the one left holding the bag. The evaluation process is arduous, time-consuming, and exhausting for everybody - referring docs included. It is also VERY EXPENSIVE and is also just the beginnning. The disease I'm dealing with most is pulmonary fibrosis - a lethal disease that has no treatment proven to prolong life, except transplant. A lot of people who get this disease, which isn't that common, are older - over 65. Unfortunately that also happens to be the upper age limit for lung transplantation at most centers. Most... but not all. And, it seems, even the age limit can be a bit of a moving target depending on how well the patient "sells" themselves. Interview "like your life depends on it" I tell people. Interesting concept, isn't it?