Mary Wu: transplantation…a lifetime journey

Amy D. Waterman, PhD Donation Stories

Mary Wu was diagnosed with chronic kidney failure as a toddler. Transplants at ages 3 and 12 saved her life. Mary reflects on her transplant journey.

I received two kidney transplants, one in 1987 and the other in 1995, both from deceased donors. No one in my family was a match to donate a kidney to me. Prior to both of these transplants and during these particular times, there was not a real push for living donation.

When I was 11 and learned that my first transplanted kidney had failed, I was most concerned that I would not receive a second transplant in time. And if I did receive one, I was concerned that it would perhaps be rejected or even fail. I was a pre-teen, so it was a very difficult and emotional time. Time became all the more precious to me, and I was very aware of life and death and how my body’s capabilities were decreasing.

I did not feel comfortable with living donation because I knew that no one in my family was a match for me. If someone was facing similar concerns, I would tell them that these are all normal thoughts and feelings on one’s transplant journey. Also, it is vital to have a support system (family, friends and other resources) and a medical team that invites you to communicate openly about everything you are enduring.

Because I was a pediatric patient at the time, I was dependent on my family (particularly my father) as the proactive caregiver and speaker on my behalf. While I was waiting for a transplant, I was diligent about following the recommendations of my medical professionals. I took necessary medications, followed “the renal diet,” and made my doctor appointments. At the same time, it was also important to me to be a “normal” kid going to school, being with my friends, and doing my homework.

There are not enough words to express how my life was completely transformed in the best of ways after my two kidney transplants. My first kidney transplant gave me back my childhood and, essentially, gave me back to my family to be a “normal” kid. Because of my first kidney transplant as a child, I have the happiest and most lively memories of being able to play with and be in the company of other children to play games, eat what I wanted, play on my own, go to school, and enjoy nature.

From the time I received my second transplant at age 12, my life has been most remarkable and extraordinary. I’ve befriended wonderful people in and outside of the transplant community, gained more precious time with my family, traveled throughout the world, finished high school and college, worked full-time, and lived on my own. Thanks to my transplant I’ve lived my life to the fullest and have been “paying it forward” by making a positive difference in the world. There is not a day that goes by that I do not think about both of my organ donors and their families.

Looking back to the time I was getting my second transplant, I wished I had known that transplantation was really a lifetime journey. A transplant is not a cure, and the aftermath has ramifications that stay with you forever, mainly from the side effects of immunosuppressant medications. It is an ongoing journey to maintain this “gift of life” with many health scares along the way. There are also emotional effects that come with the possibility that the transplant could fail, or the need to give back or to pay it forward. Then there is survivor’s guilt: I am alive but my donors are not, or my friends died waiting for transplants but I am alive.

Nonetheless, I was surprised by how “normal” life can be when you have a transplant. I am able to work full-time and not having my life revolve around my chronic kidney health challenges. I am also surprised at how I devote energy to two sides of my life: expressing gratitude for my donor families through my advocacy work while also living and being that “normal” person. It is an ongoing balancing act in the best of ways.

To people who are deciding whether to pursue a transplant, I would tell him or her that everything that occurs before, during, and after a transplant is all worth it. I have no regrets. Transplantation really and truly gives hope and life every imaginable and unimaginable way.