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“Is Mom Going to Die”

Jon Sullenberger

The positive impact of living kidney donation. Where would we be as a human race if no one ever stepped forward to help those who are suffering.   By Jon Sullenberger (Sully)

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Being asked this question by one of my daughters was unfiltered, raw, and heartbreaking.

Why are some inflicted with disease and others are not?

I do not have an answer to the second question, but I clearly remember my answer to the first, “She might, but we have to trust and believe in something bigger than ourselves”. That answer did not ease the pain or take away the fear that my daughters had while watching their mother battle kidney disease and, subsequently, kidney failure for a second time. We may never know why disease finds some and not others, but I hope my story offers some hope and insight into the remarkable gift of Living Donation.

Jon Sullenberger with wife

Kidney disease is unrelenting and without a cure. It can steal the goofiness and laughter from a home. After several medical tests, my wife was diagnosed with IgA Nephropathy in 1998 when our twin daughters were just 4 years old. It seemed as though the world had stopped. A progression of the disease led to kidney failure in 2001. Dialysis was required to keep her alive. The wait time on a transplant list for her blood type was 4-5 years. Fortunately, her sister was a near-perfect match and donated one of her kidneys in 2002. Laughter returned to our home and my wife watched as young girls became college graduates; however, with diplomas came a sudden and unexpected failure of her first transplant in 2017. It was as though the world had once again stopped, but this time it would be different.

Jon Sullenberger's with daughters

Our daughters were now old enough to see and feel the effects that this horrible disease had on their mother. Although it sustains life, dialysis steals the soul and youthfulness of those experiencing kidney failure. It can be hard on a body that is already stressed from an incurable disease. The treatment often causes other issues such as seizures, heart complications, and migraines, but most of all it brings fear; fear that a loved one will not make it to transplant. My heart sank when I noticed an empty dialysis chair because it normally meant that someone was hospitalized due to complications or chose not to continue this unforgiving treatment.

We were just about at rock bottom, which triggered the question at the beginning of my story. Some will say that without a direct match from a family member or friend, the hardest part is waiting for the phone to ring. The belief that a miracle will happen slowly disappears with each passing day.

As part of her second transplant listing, I learned of Paired Exchanges and Non-Directed Donations. Nearly two years after I signed up to be a living donor, my wife received a second life-saving transplant in 2019. A wonderful human being offered the gift of life as a Non-Directed Donor. Along with tears of happiness, that phone call brought a new sense of hope like we had never experienced. Nine months later in 2020, I became a Non-Directed Donor and my life would forever change.

I have always felt that there is nothing magical nor coincidental about our existence. It was created and can only continue because of kindness and moral courage. Really think about it: where would we be as a human race if no one ever stepped forward to help those who are suffering?

Waiting for a transplant is daunting and can come with broken promises that are devastating to those hoping for a miracle. Loved ones might want to donate, but for medical reasons are not cleared. The process to become a Living Donor can take longer than expected. It might have to be done with waning support or no support at all, but please know that you could be someone’s only hope. It just might be one of the most fulfilling acts of kindness that you will ever experience.

As for us, laughter has returned to our home once again. My wife’s sister remains healthy after donating in 2002. A wonderful ‘Zoom’ relationship has developed with her second donor. They both look forward to physically meeting in the future.

As for me, I am doing really well. I am not aware of all the details, but I do know that I was part of a chain that enabled multiple life-saving donations. I have never been contacted by my recipient and I believe that was God’s intent all along. Living donation for me was an opportunity to exercise humanity. It enabled soul searching and a reflection on where I have been. It caused me to take inventory of my journey thus far. It has made the way ahead clearer and easier to navigate. It has renewed my faith in humanity. Since becoming a Living Donor, I have met some of the most wonderful and caring people and for that, I say ‘Thank You’. Thank you for giving life, many to a complete stranger.

I hope that my story reaches those that are exhausted and might feel helpless in the fight against kidney disease. Please reach out when needed and know that there is hope. To those that are reading this and may be looking for an opportunity to make a difference, maybe the opportunity has already been presented.

Our time here is temporary. Our finish line is already marked with a date and time. I believe the only question that remains is how we choose to travel on our journey.

Thank You for taking the time to read this.

– Sully (Jon Sullenberger)


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