Note: This is really a combination of newsletter and blog...
When my husband, Capt. Rob, was diagnosed with a rare autoimmune disorder, primary sclerosing cholangitis (PSC) in 2003, just two years after we were married, our whole lives changed in an instant. PSC is a chronic, long-term, progressive disease where the bile ducts within the liver become blocked due to inflammation and scarring. This damages the liver cells leading to cirrhosis. There is no cure except for a liver transplant.
Suddenly, my youthful, viral, relaxed, hard-working husband, who came from a loving but modest background with entrepreneural dreams, became scared, angry, distant, and hyper-focused on building a successful business to take care of his family. In doing so, it created even more stress. The diagnosis itself was a game changer, and the next eighteen years would be spent working, worrying, wondering, and waiting... During the beginning of the height of the Covid pandemic, my husband, and our two children, ages 15yrs and 11yrs at the time, relocated from Nyack, NY to St. Augustine, Fl so that Rob could be actively listed on the liver transplant waitlist at Mayo Clinic in Jacksonville, FL. The median liver transplant score was lower than in New York, giving Rob a better chance of getting transplanted before developing sepsis or bile duct cancer. It is optimal to live within two-hours of the transplant center and required to live within six. The children and I were going back and forth on school vacations until March 2020, when Covid forced everyone to be virtual. And so, we left our Nyack home and became more isolated in an unknown environment. Finally, on September 10, 2020, Capt. Rob received his gift of life from a deceased organ donor. He was indeed saved by a stranger. To cope with all these challenges, including the shutdown of our seasonal yacht chartering business in NY Harbor, I knew that I needed to remain hopeful and strong for my family. Through listening to stories from other post-transplant patients we met at the weekly Mayo Clinic support group for liver and kidney transplant patients and caregivers, I began writing a book about our journey documenting it in real-time while interviewing others with varied yet incredible survival stories. In addition, I included transplant professionals who make organ transplantation possible. Fourteen months after Rob's liver transplant, my book Saved by a Stranger: Life-Changing Journeys of Transplant Patients, is now published through Giro Di Mondo Publishing. It is available for purchase online through my own bookstore website, www.lezlee.com or through major and independent outlets including Amazon. Or, if you email me at author@lezlee.com, I can give you my direct venmo account and mail you a signed copy. My goals for the book are as follows: 1. Entertaining readers with these suspenseful real-life stories of regular people surviving and thriving after their gift of life. While their stories are dramatically different, they all have received a second chance at life through organ transplant. 2. Providing hope to thousands of patients on the transplant waitlist. 3. Encouraging transplant centers to hold weekly (not monthly) support group meetings led by their transplant social worker. 4. Using my book as a stepping stone for a greater calling I now have to advocate, representing the United Network of Organ Sharing (UNOS) on behalf of organ transplant patients. While I did not personally receive an organ transplant, as a wife, mother, and caregiver to my husband, my life has been transformed from transplant. My family has been given a second chance and now it is time for me to give back. Saved by a Stranger is my contribution to giving back what was given to us. While we do not know much about who Rob’s donor is, we know how important it is to inspire, educate, and promote the continuation and proliferation of organ donation transplantation. PLEASE CHECK BLOGS REGULARLY FOR SHORT UPDATES! Thank you all for your support, comments, and stories!! If you would like to RSVP to my next book talk and signing in Nyack, please do so here: