By Alyssa Ramsfield
Kailyn McIrvin is no stranger to Puget Sound-area hospitals — she’s been a frequent visitor of them most of her life. At age 13, Shelton native Kailyn was diagnosed with a rare genetic disorder known as Ornithine Transcarbamylase Deficiency (OTC). OTC affects the way proteins are broken down by the liver and causes excruciating headaches, fatigue, nausea and encephalopathy (a broad term for brain disease). Since her teen years, Kailyn has been prescribed a variety of medications to help control these symptoms with very little success.
After years of dealing with the ongoing effects of OTC, Kailyn started on her search to find a permanent solution. “Brain scans were showing damage from my high ammonia levels,” says Kailyn. “It seemed to just be getting worse every time I had to visit the ER.”
Tired of frequent emergency room visits, Kailyn and her family traveled across the country to Washington D.C. in search of a solution. They met with a team of doctors willing to examine Kailyn and provide some insight into her condition. By the end of the trip, the option of a liver transplant deemed the most successful for her future.
There were two possible options for Kailyn’s liver transplant. The first option was the use of a cadaver liver, which included waiting on a lengthy list for a donor and dealing with the risk of an organ that didn’t work properly. The other option was to find a living donor — someone willing to go under the knife and give a fraction of his or her own liver to Kailyn.
“My family stepped up right away,” says Kailyn. “My mom, dad and sister all wanted to be tested to see if they were a match.” Unfortunately, doctors advised against this. “Doctors warned that the recovery time for the donor would be difficult and to have two patients in one house might not be the best idea,” Kailyn recalls.
While Kailyn and her family weren’t sure what to do, the solution was clear to Kailyn’s life-long friend and Shelton neighbor, Jaime Cuzick. “Jaime was with me when we found out about the option of a living donor, and I could see the lightbulb go off in her head,” says Kailyn.
“Before going to the appointment, I started thinking about how I could help with the process,” says Jaimie, friends with Kailyn since childhood and living just down the road from each other in their current Shelton neighborhood. “Kailyn asked me to be her caretaker after surgery, and I was more than happy to do that. I just wanted to do the best thing possible for Kailyn whether it was caretaker or donor,” she adds. “When the doctor said the best option would be a living donor, I knew what I needed to do.”
After countless appointments and evaluations, Jaime turned out to be a nearly perfect match for the transplant. “There aren’t very many qualifiers to be a donor,” says Jaimie. “Blood type and anatomy are the biggest pieces that matter. Kailyn and I have very similar body types and we share blood types. At that point, I knew I had to talk to my husband.”
Kailyn’s reaction to the news was emotional. “When Jaime told me she wanted to donate her liver, I started to cry,” says an emotional Kailyn. “I tried not to cry in front of a room full of people, but it was hard to hold it back. It’s such a gift to be willing to give. It is really going to change my life.”
Photo credit: Cooper Studios.
This adult living liver donor transplant will be the first ever performed at the UW Medical Center. “Our surgeon is from Canada,” says Kailyn. “This isn’t his first time doing this transplant. He has built a team at UW for living donor transplants. These types of transplants are done a lot at children’s hospitals. It will just be the first one performed for adults at UW. It’s pretty cool to be a part of their medical history.” The surgery is scheduled for October 15, 2015, ten years to the day from Kailyn’s diagnosis.
There are risks involved with the surgery and recovery time will be long. If the surgery has zero complications, the two friends will spend seven to ten days in the hospital before being released to a transplant house near UW where they will both live for several weeks, in case any complications arise.
Fundraising is in full effect for Kailyn and Jaimie. With post-transplant treatment, there will be a multitude of expenses. Nearly $35,000 will be needed to cover loss of work, medications, and day-to-day living expenses. The friends have a transplant fundraising team that has already hosted a successful garage sale and they’ve also coordinated an auction, which will be held on Saturday, September 12, 2015.
“Our families are very supportive,” says Jaimie. “I have two kids. I know the risks. I also know about the scar and recovery. I also know this is what I want to do for Kailyn.”
To help support Kailyn and Jaimie during their road to recovery visit: http://www.youcaring.com/kailyn-mcirvin-362720 or take part in the fundraising auction happening on Saturday, September 12, 2015. Tickets are $25 each. Visit Jaimie and Kailyn’s Facebook page for details.
