Posted 11/24/2014 6:00 PM (GMT -7)
My two primary caregivers and I went for the official start of the transplant evaluation. It was a very long day.
We met with a person who gave us a 45 minute overview of the process, then the social worker, the nutritionist, the insurance/financing guy, my hepatologist, the blood sucker guy, and the two transplant coordinators assigned to me, who took a long detailed health history.
After that, I had an appointment with a cardiologist who told me I will need a stress test. They will do one that involves injecting a drug as opposed to my walking on a treadmill.
We were at the hospital from 9:30 till about 3:30. I made it through, but the next day I only got out of bed for an hour or so before going back to sleep. I was extremely fatigued.
The most interesting information presented to us was the strong suggestion that I (and the other transplant candidate that was there with his caregivers) either find a living donor, or list at a hospital that regularly transplants at a lower meld score than is normal in New York City. She explained the whole process of listing somewhere else, and explained how we would have to live near the new hospital once it got close to transplant. While the instructor explained this all in a matter-of-fact fashion, it seemed to me that the NYC hospital was actually telling us not to wait for a cadaveric donor, or we might be out of luck. She also told us the excellent results they have had with imperfect livers, split livers, and very old livers - the oldest was 90. Oh and livers with hep C to be transplanted into candidates that had hep C, to be followed immediately by starting Harvoni or the like.
The people in the transplant department were uniformly kind, highly trained, and personally welcoming. Of course there were all sorts of students, visiting MD's from overseas, and who knows who else was there watching and learning from the people working in this world renowned center.
The one question I had was about another hospital in NYC that is starting to do laparoscopic donor surgeries. I would love to save my donor from having a very large scar. My MD said they are doing the laparoscopic technique at my hospital as well....though it seemed like he might have been fudging that a little. Maybe I am just reading into nothing. But I did say that it was a big deal to me if I were able to have my donor's surgery be done with as small of a scar as possible. And I know that I am a good, healthy, young-ish candidate that will most likely live post transplant - thus improving their survival statistics. I think they would rather keep me that have me go to another NYC hospital - but maybe I am just over thinking the whole thing.
During the instructional part, the instructor talked about the statistics that are available online for all transplant centers. My hospital looks like it has slightly lower positive outcomes than some other hospitals in NYC. But the statistics are updated every six months, and depending if they lose a patient, of whatever. The statistics are not evened out so that the percentages are actually comparable and accurate to the casual reader.
I was not concerned about the slightly lower score of my hospital, but now that the methodology for all hospitals has been explained, I understand that the statistics are going to fluctuate somewhat over a given six month period.
They called me today to tell me that my blood work was fine. Status quo. My meld is 15.
So far so good.