By Sharon Nanz, mother and Lindsey Nanz, daughter
Our daughter Lindsey was diagnosed with primary sclerosing cholangitis in September 2009, at age 13. PSC is a progressive disease that causes inflammation and scarring of the bile ducts in the liver, as well as cirrhosis. The condition gradually worsens and complications develop. The only viable treatment for advanced PSC is a liver transplant.
Lindsey’s PSC progressed very rapidly, which is rather uncommon, and by the fall of 2010, her local doctor was already recommending that she undergo a transplant evaluation.
My husband and I spent many hours thoroughly researching all of the pediatric transplant hospitals within a day’s drive of our southwest Virginia home. We chose Children’s Hospital of Pittsburgh because of its top ranking in the pediatric transplant field.
We came to Children’s in December 2010 for the evaluation and were very impressed with the new facility and with all of the doctors and support personnel that we met. Lindsey was placed on the national UNOS transplant waiting list.
In October 2011, an amazing turn of events occurred. Lindsey became the recipient of a domino liver transplant. A deceased donor liver was given to another Children’s patient who had Maple Syrup Urine Disease. Her liver, in turn, was given to Lindsey. MSUD is a metabolic disorder, and a liver transplant cures it. The liver is not the cause of the disease, however, and the MSUD patient’s liver is a healthy, viable liver for another patient. Our daughter received a whole liver from a living donor–sounds impossible! But Children’s offered us the impossible.
The CHP transplant doctors are pioneers in pediatric domino transplant surgery, and Lindsey was their ninth domino recipient since 2006. We are so thankful for the transplant team, Drs. Mazariegos, Sindhi, Soltys and Bond.
Lindsey and I stayed in Pittsburgh for most of three months, residing at the adjacent Ronald McDonald House when Lindsey was not an inpatient. The apartment complex is the only one in the Ronald McDonald worldwide network that is actually attached to a hospital. What a convenience! Good planning, CHP and RMH!
Many people have asked me what my experience was like, but it’s a little overwhelming to describe. Looking back, I don’t think I realized beforehand exactly how big of a deal my surgery was.
The most eye-opening experience for me was getting to “meet” my old liver. I had known I was sick and getting worse (made evident to me by a life-threatening emergency on a band trip last spring), but I still didn’t understand why I even needed a transplant. I felt healthy and energetic most of the time. When I saw my old liver (I named it “Oliver”) in the basement pathology laboratory of the hospital, I couldn’t believe I had been that sick. I’m really grateful that my local doctors recognized that I needed to go to Pittsburgh, and that my Pittsburgh doctors recognized I needed a liver even though I was fairly low on the organ waiting list. When I got my new liver, I named it “Olivia.”
The best part about Children’s Hospital is the people. I loved all the nurses and staff on floor 7B. They ensured that I was the most spoiled teenage girl there. All the transplant surgeons are friendly and they worked really hard to get me well again. My main surgeon, Dr. Kyle Soltys, made sure I never got bored. He would come into my room, steal my wheelchair, and argue with me about whose shoes are cooler (my pink sparkly Converse shoes are obviously better than his old blue ones that peek out from under his scrubs).
I also really enjoyed getting to meet my donor, Rachel. Not everyone gets to meet their donor, but we had many meals with her family and even spent one day at the zoo together. Rachel is extremely sweet and I miss her already.
Some of the special activities that I got to participate in at CHP include music therapy, dog therapy, and tutoring. The child life staff members would bring me games and videos and arrange for the music therapist, Nicole, to come visit me. Nicole is wonderful and I loved learning how to play the guitar. She even let me play on the grand piano and practice my oboe in the music therapy room. Also, several volunteers would come to the hospital each week with their dogs to visit patients. Dog visits always brightened my day. In addition to music and dog therapy, I would meet with a tutor several times a week in the hospital’s schoolroom to work on catching up on the work I was missing at home.
Several days after my surgery, on Halloween, my brother pushed my wheelchair down to the atrium, and I was able to trick-or-treat at booths set up by local businesses. Some other fun activities included concerts by choir groups and by the band B.E. Taylor, appearances by retired Steelers players, and a carnival sponsored by Rita’s Italian Ice. I loved snacking on Italian ice just about every day. Rita’s even changed out the flavors each day so there was always something new and different.
I wasn’t happy that I had to spend my “Sweet 16” birthday and Christmas in the hospital, but the nurses made sure that both days were special for me. For my birthday, the nurses sang “Happy Birthday” at precisely midnight on the evening before. They gave me a matchbox car since I couldn’t get a real car for my 16th birthday.
I had a setback and had to be readmitted to 7B on December 21. On Christmas morning I woke up to a small, lighted Christmas tree on my nightstand and next to it a pillowcase full of presents! Thank you, Children’s for making me feel loved!