Life is defined by moments and events. Moments that transform how we view the world, define our priorities, and test our strength. Shelby Gielen clearly remembers the day her life changed. The second of four children, Shelby enjoyed an active lifestyle, and was busy preparing for a provincial swimming competition when she was struck with a virulent virus that destroyed her liver with ferocious speed. Within 10 days of diagnosis Shelby was in a coma. She had less than 24 hours to live without a new liver.
It wasn’t until Shelby regained consciousness following her surgery, still intubated, that her reality hit, “My dad told me I was a very sick girl and I had received a liver transplant. My first thought was, ‘Did someone have to die?’ I quickly realized I was alive because someone had said yes to organ donation. This rocked my 14 year-old-world and instantly changed how I would live the rest of my life.”
Life after transplant
With restored health, Shelby enjoyed a relatively stable first year post-transplant. All that changed when she received a call informing her that her donor had been a carrier of the hepatitis B virus. This was devastating news. With the anti-viral medication available at the time, she could expect to live another five years. Re-transplant was not an option as the virus, now part of her body, would likely destroy a new liver. Rather than give up, claim defeat and lose all hope, Shelby was motivated. She pushed her athletic goals, became part of the UBC Thunderbird Varsity Swim Team, and even made Nationals. She raised alpacas, travelled to Asia, said yes to adventure and opportunity, not wanting to have any regrets.
Advances in anti-viral therapy helped Shelby defy the odds. Her liver gave her 13 and a half years of health, five years more than originally predicted. Finally, when she was 27 years old, her transplanted liver began to fail. She was given three months to live and told to get her affairs in order. Never one to passively let life happen, Shelby took control of her future, “I planned my funeral, sold my car and kayak, and settled my estate. I hid little notes for my siblings and family to find when they packed up my belongings. I wanted them to laugh and not be sad.”
Research brings renewed hope
But all hope was not lost. An experimental treatment had recently become available that could essentially eradicate the active hepatitis B virus, leaving Shelby a carrier of the virus but without active infection. This revolutionary treatment was a game changer. Shelby couldn’t believe the news, “I was overjoyed, but I was also blown way! Just a decade earlier this treatment wasn’t even available. Thanks to research, I now had hope.” Shelby underwent an urgent assessment, and after only three weeks on the wait list, she received her second liver transplant.
This transplant provided Shelby with another 12 years. In that time, she started a successful business, got married, traveled the world, and became an auntie. But at her annual clinic visit last year her world turned upside down. Shelby had suspected something wasn’t right for a while, she had been feeling more fatigued than usual. During a routine biopsy, it was determined she has stage 3-4 cirrhosis. Her liver is so badly scarred the only hope for survival is a third liver transplant.
Shelby was crushed when she heard this news, “My first thought was utter devastation because I thought I done something wrong, something to cause the hep B virus to come back and re-infect this liver. I had done everything in my power to protect my second liver. I never missed an anti-viral dose or monthly injection.” It was discovered she is suffering from late stage Antibody Mediated Rejection (AMR), a rare form of chronic rejection.
Shelby’s attention immediately turned to her husband, “I worried about my husband and how he would fare knowing what the future held. I had warned him before he married me what transplant life entailed, but did he really know?” During the first four years of their relationship the couple enjoyed an active lifestyle, but Shelby’s declining health means daily life has become more challenging. Ongoing nausea and pain coupled with relentless fatigue means Shelby depends more and more on her husband for household duties and driving her to her medical appointments. For someone fiercely independent, this has not been an easy transition. The couple credits communication for making the journey easier and bringing them closer. Their bond has strengthened, giving them a deeper understanding and appreciation for their relationship and one another.
Optimistic by nature, Shelby acknowledges transplant life is not without its challenges and frustrations. “We had hoped for long-term success, but transplant is not a cure. I take my medication and diligently follow my treatment plan, but here I am waiting for a third transplant. A transplant I don’t know if I will receive.”
Shelby has lived an additional 25 years because of her two organ donors and the advances in transplant medicine. Medications that were once viewed as experimental are now routinely used in transplant care. Organs that were previously deemed unaccepted for transplant are being successfully transplanted.
Despite the successes, there is still a great deal of work that needs to be done. Research into Antibody Mediated Rejection (AMR) is desperately needed. It wasn’t until the last decade that AMR was recognised as a distinct form of rejection and a major contributor to graft failure. Treatments are limited, and their effectiveness is debated.
“Research saves lives. It has saved mine more than once. Changes in transplant science and procedures are constantly evolving, and we need research to help maintain that pace, and to keep up with saving the lives on the ever-growing transplant list.”
The transplant journey is a journey of discovery – uncovering profound inner strength that resides deep within. It is about resiliency, of learning who you are, and embracing bumps along the way. Most of all, transplant is about love. The love of a donor and their family choosing to give the gift of life to another person.