I was in my senior year of high school, when I was diagnosed with autoimmune hepatitis. I was 17 years old. I originally went to the doctors because of a knee injury and he was concerned with all the bruising I had on my legs from playing soccer. He sent me for bloodwork and from there it was a series of tests until they figured out what was wrong with me. I thought they were crazy, because I felt fine and was upset I could no longer play soccer. Soccer had been my life, so I started running to stay in shape. In college, I was approached by one of my professors who had seen me running around campus and asked me about joining the cross country team. I thought he was crazy, running long distances for fun? However, my junior year I found myself trying out for the cross country team. I was number one on our team, second in New England, and I qualified individually for nationals where I placed 54th. I’ve always credited my running to slowing the progression of my liver disease. I tried to never let my disease control me, I wanted to live my life the way I wanted.
I continued to run after college and ran in many races, always one of the top 10 females and placing in my age group. In 2005 I ran the Boston Marathon for the American Liver Foundation. After graduating from Saint Anselm College, and later Rivier College with a degree in nursing, I moved back to Connecticut. My first job was at Yale New Haven Hospital. I have been a nurse for the past 13 years working in various Emergency Departments, Intensive Care Units, Surgical Recovery Units, and specialized units like Interventional Radiology. In May 2020, I passed my nurse practitioner boards and I am hoping that once I am recovered I will be able to work with a transplant team to help others who are going through what I have. In 2013, I gave birth to my beautiful daughter Reagan. My husband, Dave, and I were overjoyed, but the pregnancy took a heavy toll on my health. Reagan was born 5 weeks early and only weighed 4 pounds. Reagan is a tough little fighter, and was discharged 3 days later while I spent another week in the hospital.
At the end of 2017, I was placed on the transplant list in tandem with my gallbladder removal surgery. During the summer of 2020, my symptoms worsened, and my doctor said it was time to start looking for a living liver donor. I’ve always been a private person, so when my husband and I decided to share with everyone that I needed a liver transplant it was hard. We started a page on Facebook called “Cait Needs a Liver,” a few newspaper articles were written, and the Ridgefield Running Company shared a call to action on my behalf. On January 12, 2021 I received the call that Yale had found a match. My match was Sophie Long, a 25 year old courageous and selfless runner, and former employee at Ridgefield Field Running Company. Surgery was scheduled for January 26, which was postponed at the last minute, until February 2, due to a COVID outbreak on one of the floors. After 10 hours in the Operation Room with Dr. Mulligan and his amazing team. Sophie was discharged after 5 days and I was right behind her the next day. I would later have to go to IR for a hepatic arterial thrombosis (HAT) and then the OR for a portal vein occlusion 2 days after being discharged. The path to recovery has not been easy, but I am taking it one day at a time, listening to my body and hugging and kissing my family every chance I get.
I have been under the care of Dr. James Boyer at Yale New Haven Hospital since I was 17. He has been there for me, for every major event I’ve had in my life. I cannot thank him enough for everything he has done for me. He is a brilliant man and I am forever grateful. The whole transplant team at Yale has been amazing, especially my hepatologist Dr. Kim To. She has answered every ridiculous question I have asked and offered perspective to my husband and I during stressful times. The transplant team performs miracles. My donor, Sophie, is an amazing, genuine, inspiring, and selfless person that I’ll never be able to thank enough. She’s an angel. While my disease had not yet hospitalized me, and I wasn’t gravely ill at the time of surgery, the cards were on the table and there was no chance of cure or recovery. Sophie has given me the gift of a chance to grow old with my family, to be there for all the big and small moments that every parent and spouse imagines and often takes for granted. Sophie has also spared me, my entire family, and those who care about me from the reality of experiencing and witnessing the full and agonizing digression of my liver disease spread out over months or years. For these things I will forever be grateful and humbled. Organ donors, both living and deceased, are real life superheroes deserving of the highest levels of our admiration. I have learned that many of the potential donors who called Yale on my behalf have chosen to remain in the program. From this pool of donor candidates, two patients have already received lifesaving transplants. I am so happy they were a match for someone else, and so proud that my story inspired them. I have been humbled by these donors. Through this journey I have learned there are so many good people out there willing to help complete strangers. The more I am able to share my story, the more people I am able to reach and maybe that will help save one more life.
Three months after my transplant I went out for my first run with my daughter and husband. We went to my local track and started by running the straight sections and walking the curves for a total of 3 miles. It felt great to use my lungs again, but it was also extremely hard. I still tire very easily and after being cut in half, my abdominal area is tight and uncomfortable. I’m still getting used to that feeling. When I first start a run, I develop a pit in my stomach, and everything tightens. After stopping to catch my breath and stretch a little I can resume my run without any further issues. I’m not training for anything specific right now, I’m just trying to build a base and get back into shape. My family and I recently ran a local 5K and we all placed in our age groups. I’m looking forward to the virtual Brave like Gabe 5K and the town Turkey Trot, which I won two years in a row. My big goal is to run Boston in 2022 for the American Liver Foundation with my donor Sophie. Phil Shin will also be there running with his donor. I’m trying to take running one day at a time and listen to my body. My new liver has been through so much and I can’t wait to see what it can do once everything is settled.