Welcome to Jean's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
A few days before Christmas 2018, we were informed that our father, Jean, would need a new liver if he were to to overcome the liver disease that he was diagnosed with several years ago. Until now, Dad had asked us to keep his liver disease private, so out of respect for him we followed his wishes. In light of the the new prognosis, however, Dad agreed that it is time to let you all in to be given an opportunity to support and cheer him on.
We have been working closely with the Liver Transplant team at Mt Sinai in NY for over a year now and they are truly wonderful. January 8th their team delivered the news that Dad had been officially moved onto the liver transplant list for NY. Getting on the transplant list is far easier than actually receiving a liver unfortunately. According to the Washington Post article I have included below 14,000 people were on the national waiting list for liver transplants in 2016. Only 7,841 livers from deceased donors were transplanted, or 56%. https://www.washingtonpost.com/national/health-science/who-deserves-a-liver-officials-try-to-make-organ-transplants-fairer/2017/09/01/7e24b8e0-81fe-11e7-902a-2a9f2d808496_story.html?noredirect=on&utm_term=.92fea8d46098
Because there is such a shortage of organ donors in the US, the medical system had to come up with a numerical based formula to unbiasedly prioritize transplant patients by estimating degree of illness. This score is called the MELD score, and the higher it is, the shorter your life expectancy. Someone with a MELD score of 40 is expected to have days to live. While the MELD score is certainly unbiased - based purely on lab outputs - we have been assured by many sources including our team at Mt. Sinai, that this score is not always a true indication of how sick a patient is. The other issue is region and organ availability in that location. Dad's current MELD score is a 29 as of this writing. However, in NY to get near the top of the transplant list you need a score of about 35 to get transplanted (with Type A blood). Waiting for your MELD score to increase means you are growing sicker and potentially even developing complications that could jeopardize your chances of staying a viable transplant candidate. Hospitals obviously don't want to take undue risk in major surgeries like a transplant, so if the covering team believes that you have become too weak or too sick to undergo the surgery, they could remove you from the transplant list.
As we learn more information to share we will post it here. In the meantime feel free to share words of encouragement, prayers, photos with Jean, memories, etc. It takes a village and we look forward to our continued exchange with all of you.
Lots of Love, Kim Leslie & Justin
If you are interested in learning more about organ donation the United Network for Organ Sharing provides some education and FAQs https://unos.org