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It was 1995, and I was about to turn 13 years old. All I wanted was to belong and be just like everyone else, but all I knew was that I was different for two reasons: I was Asian and I was sick.
For reasons I couldn’t remember, I had agreed to talk to my classmates about my illness and now I was sitting at the very center of my health class with twenty kids sitting around me waiting. They were all waiting to hear about how I was born with chronic kidney failure and that because of this I was now waiting for my second kidney transplant.
What I knew about my illness, I knew from my dad. My mom had already left three years after my first kidney transplant, and my dad knew more about my health story than I did at 13. When people hear that children are sick, they immediately feel sorry for the child and say things like, “Oh, that poor child. No child should be sick.” Even though I was only 13, I wanted to say to them, “No, it is harder on the parents. It is hardest on my father who is raising two daughters on his own and one of them is very sick.”
I took a deep breath and shared my story. “I was born a healthy kid, but then something went wrong when I was 3 years old,” I told my classmates. “I had a high fever and my parents were told that my kidneys failed. We are born with two kidneys, and we can live fine with one kidney, but we can’t live without any kidneys. I had my first kidney transplant when I was 5 years old after spending two years on dialysis. Now my first kidney transplant is failing and I need another kidney transplant.”
Mrs. M proceeded to explain dialysis to the class. She said dialysis was like a washing machine that cleans dirty clothes so the clothes can smell fresh and you can wear them like new. She said that the dirty clothes were like kidneys that had to be cleaned, but that the kidneys had to be cleaned even more frequently by dialysis (aka the washing machine) because sick kidneys could no longer do the job that regular kidneys could do. I was comforted by how well she described it all.
I was happy to see my classmates paying close attention as they learned about my disease. It was the first time that I felt accepted. For once I did not feel so different from them. When class was done, a couple kids even came to wish me well and said they hoped I would get my second kidney transplant soon. I hoped so, too.
I was young, but I was no stranger to the idea of life and death. I often wondered if I would die waiting for my second transplant. Then on May 5, 1995, I got the call that I had been waiting for and received my second kidney transplant from a selfless four-year-old girl who gave me the gift of life. It is the best gift anyone has ever given me and not a day goes by that I don’t think about and thank her and her family.
This year marks the 25th anniversary of my second kidney transplant. Since the first time I shared my story in Mrs. M’s class, I have gone on to share my story with many others. I do this to raise awareness about the critical need for organ donors and to educate others about the incredible legacy we can leave behind through organ, eye, and tissue donation.
I am especially eager to tell my story to fellow members of the Asian community because we are typically resistant to organ donation. Death and organ donation are taboo topics in the Asian community, so I take every opportunity I get to speak about how organ donation saved my life. I encourage everyone I speak with to register as an organ donor.
Now that I am older and healthy, I can’t help but think back to what this whole experience must have been like for my dad. Over the past 25 years, I have learned so much about what he endured as a single parent and immigrant who was born in China and came to a new country without any family and with a different health care system. I’ve learned how hard it was for him to watch me suffer as we waited for my new kidneys, yet he was—and still is—the sturdy rock of my life. I couldn’t have done any of this without him.
It is 25 years later and I have shared many versions of my kidney story. No matter how many times I share it, there is not a day that has gone by that I do not think about my second organ donor, a little girl who would now be young woman at 29 years old, and my first organ donor, a man named Brian who gave me back my childhood.
Here is to them. Here is to another 25 years. Here is to celebrating life as the greatest gift.
Mary Wu is a kidney recipient and organ donation advocate. She wrote a book called “Confessions of a Kidney Transplant Recipient” all about her journey. To learn more about becoming an organ donor, please visit LiveOnNY.org.
In support of Donate Life Month, Northern Westchester Hospital is partnering with LiveOnNY to tell the story of Mary, and others whose lives depend on organ donation.
Register to be an organ donor today at northwell.edu/donatelife.
