Nell Gustavson

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Nell (right) and Liz

Finding hope and new life through a long-lost family bond

I was diagnosed with PKD in 1987 at the age of 27. This was not a big surprise for me, especially since my father, grandmother and aunt all had the disease. The surprise was who donated a kidney to me—my niece, Liz, whom my older sister had placed for adoption at birth!

After years of searching, Liz found us, her birth family, when she was 30 years old. We had no knowledge of her whereabouts until then. When Liz met my sister, her husband and their son–her half brother–she described it as special, like old friends seeing one another after a long absence. After being told of our family medical history and that I would eventually need dialysis or a kidney, Liz immediately said she wanted to be my donor. On April 23, 2010, she was!

Since the transplant occurred before I had to begin dialysis, I did not face many of the challenges that other PKD patients sometimes experience. The transplant has allowed me to do things I never thought possible, like running. I participate in many 5K and 8K runs now, and was part of a 5-man team in a marathon. I never miss an opportunity to wear my PKD shirts at these events!

screen-shot-2016-11-01-at-9-14-35-amAlthough Liz lives in another state, she and I had the opportunity to get to know one another prior to the transplant and we formed a wonderful relationship. Our bond has become even stronger since the transplant. I tell her she is always with me and that I love her with all my kidney!

I have participated in PKD and Alabama Kidney Foundation Walks in an effort to raise awareness for PKD. I was also part of a panel discussion for an Alabama Organ Center conference where I had the opportunity to educate health professionals about PKD and the importance of organ donation. Liz wrote a book about being adopted and how much her life has changed since finding her birth family.

You never know where life will lead you and what surprises may await you. I’m just grateful that Liz found the path that led to me!