April 29, 2024

National Donate Life Month- What It's Like To Wait For A Transplant

Written by: Kelley McClellan

In honor of National Donate Life Month, we wanted to share a glimpse into what it’s like to wait for a second chance through organ donation. Our northern Nevada team met with Charlenn (Lenn) Cabitac in March to learn more about her story of being listed for her second kidney transplant and how it feels to look for a living donor. 

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Lenn’s experience began when she was diagnosed with end stage kidney disease in 2013. She felt like her life was completely turned upside down. It was a total 180-degree change when suddenly her days were filled with doctor visits and dialysis treatments. Lenn eventually had to quit her job which led to worrying about insurance coverage and how she would be able to afford all of her complex medical needs. She shared that when a person wants to become listed for a transplant, they must not only have Medicare, which she had, but also private insurance that can be incredibly expensive.  

Fast forward five years later, in 2018, Lenn received her ultimate gift through a kidney transplant. Unfortunately, only three months later, she was diagnosed with diabetes caused by the steroid medication she was on for a prolonged period of time. One year after that, she experienced acute rejection which eventually led to total rejection when she was approaching her second transplant-versary in 2020. Lenn became so sick she slipped into a coma for a week which brought her back into a routine of dialysis treatment three times per week. In 2021, she got relisted for transplant, but was told by her medical team that her antibodies were strong. This meant her wait would be longer this time around to find the perfect match. Sadly, in 2022, Lenn found out that her transplanted kidney became necrotic, and she had to undergo a nephrectomy, which is a kidney removal. Without this procedure, she would have died of sepsis.

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Even with life throwing her these extremely challenging health circumstances, Lenn began to think outside of the box and realized her best route to take would be to find a living donor. Luckily, her transplant center has a program called ‘Gift Works,’ where a group of volunteers assist in finding a living donor. Lenn is also lucky enough to have a best friend and husband who advocate for her daily and help with her efforts to find a living donor. 

Along with working hard to ensure she can receive her gift of life, Lenn also has daily struggles that come along with being on dialysis for an extended period. She feels like it’s a job because she must be there several times a week with each treatment lasting three to four hours. It doesn’t matter if it’s stormy or sunny, her life depends on going to her treatment center; especially when listed for a transplant since it is required to stay compliant. Lenn also wants everyone reading this to understand how emotionally and physically draining dialysis is. She endures daily weakness and headaches along with muscle cramping that is painful, due to low blood pressure and oxygen levels. 

What would it mean to Lenn to be transplanted and have her life back? It’s the simple things. She would love to go back to having a “normal” existence and have an improved quality of life. Why does she want to have a living donor? Lenn hopes to have less complications and a shorter wait. Waiting for an organ transplant is full of struggles and each person’s journey is different. The longer someone stays on dialysis the more their health is complicated. Lenn continues to be hopeful in her new transplantation journey and believes her hero is out there. We send hope and strength to her each day during her wait. 

Are you moved by her story? Register to be a hero and learn more information on being a living donor here!