In 2003, Capt. Rob was diagnosed with both Ulcerative Colitis and the rare incurable autoimmune disorder, Primary Sclerosing Cholangitis (PSC). Married just two years earlier and living in New York, I had no idea the effect this was going to have on our lives. Even though he did not drink alcohol, we knew that the bile ducts throughout his liver would become scarred leading to cirrhosis.
For 15 years Rob’s disease was manageable, but in 2018 his disease had progressed to the point that he was put on the liver transplant waitlist at Montefiore Hospital in the Bronx, New York. The Model End-Stage Liver Disease (MELD) score from 6-40 determines how how close a patient is to mortality determining priority on the transplant wait list. Each region has a different median MELD score because of the ratio between the deceased donors compared to the recipients in need. In New York, Rob would have to be at a much higher MELD score (close to 35) to receive a transplant. This would put him at a much higher risk for developing complications and being incredibly sick before transplant. In Florida, however, his chances of receiving a deceased liver (which is procured after a patient is pronounced brain dead in a hospital after an unexpected trajedy but kept alive on machines) were greater because the average MELD score was 25-28. The score is determined by liver and kidney blood counts.
Even though Rob's liver blood counts were high causing him to have jaundice (yellow skin and eyes), muscle mass wasting, extreme fatigue, and swollen veins in his esophagus, his MELD score, like many patients with PSC, remained low (18-19). This led me to advocate via petition the United Network of Organ Sharing (UNOS) to consider giving exception points to PSC patients upon being listed for transplant. Understanding the dilemma, the doctors at Montefiore encouraged us to seek a living donor where a healthy person with compatible blood type and body mass would donate 50% of their liver which would then regenerate back to its normal size. We did have a potential candidate, but he did not pass the strict evaluation process.
In October of 2019, after much research, Rob made the bold choice to relocate to St. Augustine, FL so that he could be listed at the world renowned Mayo Clinic in Jacksonville. He knew he had a better shot at getting a liver before getting deathly ill. When we visited the month prior for a 10 day thorough evaluation, we were so incredibly impressed with the entire transplant team. We met with a Hepotologist, Surgeon, Dietician, Social Worker, Psychologist, Pharmacist, being educated as much as possible. At Mayo, you never feel rushed and everything is so well organized.
Initially, I stayed at our Nyack, NY home with our teenage son, River, and pre-teen daughter, Skye, running our yacht charting business while we came down on school breaks. Then, when Covid hit New York in March 2020, our business came to a screeching hault and we escaped to be with Rob as a family in St. Augustine while the kids reluctantly continued their school online. Suddenly, we were displaced from our home not knowing when Rob's transplant would happen. From December through April, he two "dry runs" where the procurement coordinator called to offer him a "high risk" Hep C liver. After going to the hospital and being fully prepared for the surgery, it was called off after the organ arrived, was inspected by the surgeon, and determined the liver t was not working properly.
Throughout our time waiting, worrying, and watching Rob wasting away, we discovered the Mayo Clinic's weekly Second Chance Support Group. This was a group of pre and post liver and kidney transplant patients who kept us hopeful and confident that everything would happen in the right time. I was so amazed by their inspirational stories that I began interviewing them in detail and writing a book about not only our journey, but theirs. Writing gave me purpose and kept me going. In addition, I included chapters from professionals in their field so that the reader could get a full understanding of the organ donation and transplantation process.
Finally, on September 10, 2020, Rob got the call and he received his miracle. Almost immediately after surgery, the color in his face returned to almost normal. Although he was in excrutiating pain, he could immediately feel a difference in his body like having a new engine. Luckily, he did not experience any rejection. While we cannot know the details of the donor unless the family chooses to respond to a letter that Rob will write 6 months after his transplant, it was indeed a perfect match.
Going through what we did during the pandemic, our whole world has changed. We are now committed advocatesfor organ donation and transplantation through storytelling. We want to make our passion our profession in order to inspire others not to give up, educate the public to increase organ registration which will save lives.