When this is over, we’re going dancing.
Being diagnosed with kidney disease is not something anyone adds to their bucket list. Going on dialysis and getting a kidney transplant even less so. But, that’s life. My family and I started a campaign to spread the word about my quest to find a living kidney donor. We’re asking you to help us share my story so I can find the perfect match.
June 27th, 1992, was supposed to be the happiest day of my life. I had just delivered my son, Matthew, and was anticipating the beautiful life ahead for my husband and me.
Yet, as I remained in the hospital recovering, my doctor came in and said, “I have bad news. Your kidney levels are elevated.” After a series of tests, I was diagnosed with focal segmental glomerulosclerosis, a type of kidney disease. “You will need a kidney transplant to survive”, the doctors informed me.
My heart sank.
Determined to not let this diagnosis get the best of me, I did everything I could to stay healthy. I watched what I ate, exercised, and did everything else possible to prolong needing a kidney transplant. Ten years’ later, my generous family came to the rescue. My mother, and sister tested to be my donor. Typically, siblings prove to be the best match for each other. In this case, however, my mother, who was 67 years-old at the time, ended up being a perfect match. She was even the oldest living kidney donor in NewYork-Presbyterian/Columbia history.
On October 30, 2003, we underwent our surgeries. The day after was Halloween, so my mom waltzed into my hospital room wearing a Halloween mask. I felt better than I had in years and was relieved to see my mom recovering so quickly.
I knew I was lucky.
At age 84 she is still an active member of the community. I’ve found this community to be not only a strong support for what I went through, but a way to give back and help those who are currently in need of an organ transplant.
Fast forward twenty years.
I have truly had the beautiful life I imagined the day my son was born. I’ve had a loving relationship with my husband, whom I met at the University at Albany during our freshman year. We realized during our first encounter that we had grown up one town over from each other on Long Island and have been inseparable ever since. I got to see my son graduate from both the University of Michigan and Harvard Business School, making me feel very proud as a mom. I’ve been able to have a successful career as an accountant for trusts and private foundations, and I love what I do.
On New Year’s Eve of 2019, my heart sank again. The doctors informed me that my mother’s kidney was failing. I would need another transplant to survive.
This time, however, the situation was more urgent. My doctor immediately placed me on dialysis 3 times a week for 3+ hours a session to keep my kidney function stable to keep me alive. Unfortunately, with twenty years gone by, my sister is not able to donate the way we had previously hoped. Other family members who would gladly donate their kidney to me are sadly not eligible to be a living donor.
I am now hoping to rely on the generosity of others to find a living donor so I can get back to living my beautiful life. I am a very private person, but I know that to receive the kidney transplant I need I must venture outside my comfort zone and share my story with the world.
Sue, Rob, and Matt