February 14, 2022: Today we celebrate those who have given or received the gift of life through kidney donation. @NKFMDDE Associate Executive Director shares her story of the GIFT OF LIFE!
Nicole Scharf shares her story.
“I believe everything happens for a reason. Through my work with the National Kidney Foundation, I had become personally connected to many dialysis patients, including my dear friend Allyson. But despite being knowledgeable about the daily challenges of someone with kidney disease, I never seriously considered living donation for myself.
Until November 7th, 2018…….
On that day I attended a conference with a transplant surgeon in Newark Delaware. As he began presenting about living donation and a smartphone app that allows users to evaluate their potential candidacy, I was sitting at a nearby vendor booth and decided to try it. As soon as I plugged in my information the words “best possible candidate” appeared on the screen.
But I wasn’t completely sold… not yet anyway.
That evening I returned home to a Facebook post from my friend Allyson. I had known about her journey with kidney disease and her seemingly endless hours spent on dialysis. Ally’s kidneys failed in March of 2014 and she received dialysis three times a week for four hours at a time. Today was the day, she was finally added to the wait-list to start the journey of finding a kidney donor.
Her post sent chills up my spine. The timing was like something out of a movie. I immediately texted her, “I’m getting tested.”
We found out immediately that I was a blood match for Allyson, but the full testing process took more than six months to complete. They truly leave no stone unturned, and it felt like six years at times.
The most challenging part of my transplant journey was learning (on Valentine’s Day) that we weren’t a perfect pair. A tiny marker in my blood would prevent me from being Allyson’s donor. At that moment I was devastated – crushed that I had come this far and couldn’t personally help her. I thought, this is the end of my journey, I’m not going to go any further with this.
Through my transplant coordinator, I learned about a paired exchange program, which allows people like me to help patients who have a willing donor that isn’t a match and create a ripple effect of living donation. I was still able to help others with my gift of life – but should I?
That night, my husband said something to me that put everything in perspective.
“Why are you doing this?”
“I’m doing this so she can get off of the dialysis machine, I’m doing this so she can get a kidney from a living donor and increase her chances at a longer, better life.”
He replied: “Then why does it have to be yours?”
On May 15th, 2019 Dr. Swanson performed my transplant surgery – allowing me to be a part of an incredible 10-person living donation chain.
It has now been almost three years since my surgery, and I’m healthier than I’ve ever been. Sometimes it’s deceiving because I forget. I feel so normal. I’m a little more aware of what I put into my body and I drink a lot more water.
I wish I had a million more kidneys to donate. I really truly believe that God gave us two kidneys so we could give one away.
My best advice for others considering living donation is to take the time to really educate yourself. It was helpful for me to get to know what other people’s experiences were. Everybody heals that their own pace and everybody’s journey is unique.
And as educated as I was, it was still much different than I expected. At times it was emotional, overwhelming, and scary – but I couldn’t be more grateful – and I would do it again in a heartbeat.
I’ve always had a passion for my work with the National Kidney Foundation, and now the mission just means so much more to me because it’s personal.
I meet families every day whose loved ones are suffering – who’ve benefited from NKF’s incredible support system and depth of resources. And I take pride in knowing that we are championing advancements in research so these many families will have more time together.”
Learn more about living donation by visiting kidney.org/atoz/content/living-donation
We want to hear your journey, in honor of #nationaldonorday, share your story on our social media platforms. Let’s flood the channels with hope and love!