Swimming for Life: How Jillian Best Turned Adversity Into Advocacy for Organ Donation
June 1, 2021
Athletes, who by their very nature are sources of inspiration, work hard to achieve personal and professional goals they set for themselves. What happens when an athlete is faced with physical and mental challenges that can come with liver disease? Jillian Best shares her insights into her experiences before and after a liver transplant.
Ms. Best lives in Ontario with her husband Zach, and their two pugs Frankie and Beans. In addition to running her own hairstyling salon, Jillian is training for a charity swim across Lake Ontario later this year. She has a disease called Hereditary Hemorrhagic Telangiectasia (HHT). This disease can cause malformed blood vessels in various organs, and in Jillian’s case the HHT affected her liver. This led to liver failure, and then a liver transplant.
Has sport always been a part of your life?
I have been involved in some kind of sport my whole life. As a kid I grew up swimming and doing acrobatics. Later I got more into running, and eventually added strength training to my routine. Now I mainly swim, but I also regularly enjoy running, strength training, prone paddling, and hiking.
Sport and competition are a huge part of my life. They create balance for me. I set aside time for myself to work on discipline, strength (mental and physical), and endurance. I enjoy pushing myself to new heights and distances. Competition gives me a goal, motivation, and reason to train. I enjoy testing my abilities against others, and even for myself…I like to see what I am capable of.
How did you feel when you received your diagnosis?
I received my diagnosis at a young age of 15. I don’t think I fully understood at the time how serious it could be, or that I would end up needing a liver transplant to live. My mother had her first liver transplant from HHT, which is when the rest of the family got tested for it. I thought if it ever affected me it would be years away, as an older adult. I experienced my first serious symptoms of HHT when I was only 21 years old.
Fatigue is one of the main symptoms that liver disease patients live with. How did you overcome that?
It took me a while to realize that my fatigue was abnormal. I napped any time I had the chance. When I was waiting for my liver transplant, I had to stop working because I was too tired and sick to do much of anything. The liver transplant allowed me to overcome the fatigue.
How did you find the motivation to start rebuilding muscle mass and getting back in shape?
I was sick for a long time, and lost all of my muscle, so I was eager to get back into shape as soon as I could. When I was recovering from my transplant, I learned about the World Transplant Games. I saw that swimming was a sport in the Games and I instantly decided this was my goal.
I wanted to compete at the next games in Malaga, Spain in 2017. They were only a year and a half away from when I received my liver transplant. Two months after my transplant I got back to the gym, starting working out and swimming at the YMCA.
How did you become involved in the Transplant Games?
A volunteer handed me a World Transplant Games brochure when I was still in the hospital. After I competed in Spain, I was hooked. The following year I competed at the Canadian Transplant Games in Vancouver BC and won five gold! I trained extremely hard for the games in New Castle, England in 2019. I came away with five golds and set all new world records in my age group in swimming.
Tell us about Move For Life, and your upcoming swim in Lake Ontario
Move for Life is a foundation I created with friends who have either had a transplant, donated, or have been affected by organ donation in some way. We promote active living post-transplant, and to honour our organ donors. We want to shorten the waitlist for an organ transplant, and we plan to do this by raising money and awareness) to support hospitals to equip them with the newest technology. ARP – abdominal regional perfusion can help to increase the donor pool of organs to be transplanted.
Each year we want to hold a sporting event involving a transplant recipient (or recipients) to help raise funds and awareness. This also shows what life after transplant can be, that organ donation really works, and can give life back to an individual.
This year is our first event and year as a charitable foundation. To kick it off, I will be swimming across Lake Ontario without stopping, on August 3rd. This is a 52 kilometer swim and could take anywhere from 16-20 hours! The swim will start in Niagara-on-the-Lake, and finish in Marilyn Bell Park, Toronto.
What would you want to tell patients waiting for a transplant?
My advice would be to try to stay as positive as possible, take one moment at a time. Try to find things that bring joy, even if they are small. I did a lot of colouring and painting when I was sick. We are a lot stronger than we even know. Never forget that.
This obstacle will make you a stronger, more resilient person, and bring a new perspective to life and how precious it really is. Stay as active as you can without overdoing it. The stronger you are going into the transplant, the better you will recover. I want to encourage others to live their best life, surround yourself with positive people that lift you up!
You can learn more about Move for Life at MoveForLifeFoundation.com
