I wonder when to start the process of getting on a transplant list. My husband's MELD score has not been discussed at any appointments, but might fluctuate between 10-12 or so. He is not on URSO. Last week his fibro-scan showed that his cirrhosis was in stage 4 (his score was 68 on a scale of 2.5 kPa to 75 kPa. They will not do ERCP's on him anymore because they say his ducts are too constricted and at this stage the risks outweigh the benefits. He sees a gastroenterologist, not a hepetologist. I wonder if you have to push for an evaluation and what the right timing is. Nobody even mentions it at the doctor appointments. I don't know how to proceed - to push ahead or not. I am the advocate for any next step. Am I being an alarmist since nobody can predict how long someone can stay functional in stage 4 cirrhosis? Do I just need to wait until things get worse with his health?
Thank you ahead of time. As always, there is good advice from this group.
My personal opinion is that it is better to be listed earlier rather than later while the patient is still a bit more healthy and the required testing doesn't need to be as rushed. Generally you need to be referred by a doctor to get involved with a transplant team. Lay everything out, just like you did above, to your husband's gastro and ask him if it is time. Each transplant center differs, but the service provided is usually pretty comprehensive and will offer counseling for your situation.
SO, what you are saying is that to be a candidate for a transplant, your MELD score and organ availability are only one part of the formula. The other part is your percentile for survival. When I plug in the numbers for the MAYO Clinics Revised Natural History Model for PSC, I get 85%. (that is as long as his varices don't bleed (grade 1 now) which would bring it down to 59% one year survival risk. UG. To me it seems wise to get evaluated and on a list even if his MELD is only 11 or 12.