Shelby Gielen’s journey with liver failure and organ transplantation has been nothing short of extraordinary. As a two-time liver transplant recipient now awaiting a third liver transplant, she continues to navigate the complexities of chronic illness with strength and an unwavering determination to improve the system for future patients.
Life Since Transplant Stories
Since filming Transplant Stories—a compelling series on the Knowledge Network that offers an unflinching look at organ donation and transplantation through the eyes of patients, families and donors—Shelby has continued to face serious health challenges, including multiple hospitalizations for hepatic encephalopathy. As toxins build up in her system, she finds it difficult to form complete sentences, battles relentless fatigue, and fights severe nausea. Shelby is honest about the struggle, “Staying alive and keeping myself strong enough to survive the surgery has been incredibly difficult. Every passing week, I find myself growing more frail and it scares me.”
She also acknowledges the increasing difficulty of each transplant. “I almost can’t fathom how I’m going to do this next one, but I have to,” she says
Finding Strength in Advocacy
Shelby has grown up in the health care system, undergoing her first liver transplant at just 14 years old and receiving her second transplant in her late twenties. Shelby acknowledges the wait for her third liver transplant is daunting, but she finds purpose in transforming adversity into positive change. “I hold onto what my dear friend and fellow liver recipient Jill always believed—find silver linings in difficult moments is key to healing,” she shares. By using her lived experience to advocate for healthcare improvements and advances in transplant medicine, Shelby hopes to help others navigate the transplant journey more smoothly.
She encourages fellow patients to use their voices, especially when it comes to being engaged in the research process, “As patients, we posses such a unique, firsthand insight and awareness of what it means to live this transplant life. We know where there are gaps in care and what we want to see for the future of donation and transplant science. We can use our knowledge to shape policies and research.”
Evolution in Transplant Care
Having spent over three decades in the organ donation and transplant system, Shelby has witnessed significant advancements. “Transplant procedures and post-operative monitoring have improved tremendously,” she notes. Yet, she dreams of a future where patients can have one organ that lasts a lifetime, without the fear of graft loss or failure.
Despite being on the receiving end of many medical advancements, Shelby has seen firsthand where the system still struggles. Because of her rare form of chronic rejection, initial assessments often fail to capture the severity of her condition. “Doctors and paramedics unfamiliar with my case sometimes misdiagnose my symptoms as a head injury, stroke, or even an overdose,” she explains.
Her motivation comes not only from a desire to keep going for her loved ones but also from a passion for making the transplant process easier for those who come after her.
What Everyone Should Know About Organ Donation
Shelby wants people to understand that the process of becoming an organ donor has changed. “The sticker on your driver’s license is no longer how donors are identified. There’s a centralized registry where you can record your wishes.” She urges everyone to visit BC Transplant to register their decision.
Most importantly, she stresses the need for conversations about organ donation. “Even if you’re registered, if your family doesn’t know or is unsure, that can result in a missed opportunity. Talk to your loved ones about your wishes—it could save a life.”