A New Chance at Life

Nikki and her son, Connor Jones

Nikki was lying on a hospital bed next to her 19-year-old son, surrounded by tubes, machines, nurses, and the deafening sound of her heart breaking when he was pronounced brain dead.

She asked if he could be an organ donor.

Thanks to Nikki’s generous question, Connor Jones’s pancreas, liver, heart, lungs, and kidneys gave five people a new lease on life, and his corneas restored eyesight to two more. Writing about their story last year inspired me.

I was already registered to be an organ donor upon death. But after learning more about the thousands of people waiting, and often dying while waiting, I decided to step up and apply to be a living kidney donor. After all, I figured, I have two healthy kidneys and only need one.

First came an email from UW Health, acknowledging my request to be a donor. Then Rich, a kidney donor mentor, called to share his experience and answer my endless questions. Soon Melissa Schafer, UW Health’s transplant coordinator, was reaching out via email and phone.

The live donor process is impressively thorough. Everything in your current and past health history and your family’s health history is examined. I was almost turned down because of a long-ago cervical cancer scare, but was reinstated when they learned I’d had a hysterectomy with no follow-up treatments required.

My age (66 time of donation) and other factors—nonsmoker, nondrinker, with normal blood pressure, great cholesterol numbers, and not on any medications—were helpful. Being physically active and having made significant dietary changes over the past few years was also beneficial.

Eventually, I was scheduled for an all-day series of tests in Madison. Meanwhile, my friend Joan had read my column about Connor’s gifts of life and mentioned that her nephew-by-marriage, Tom, needed a kidney. Tom is in his early 30s, has three young children, and loves fishing and nature. I gave Tom’s full name to Melissa and she made the contact. Tom would be my potential kidney recipient, and Joan became my cheerleader throughout the process.

On Valentine’s Day, which is National Donor Day, Dane and I arrived at UW Health at 7 a.m., carrying a jug of 24 hours’ worth of urine in my favorite Grand Canyon souvenir bag. Dane went off to find the cafeteria while I checked into the Transplant Center.

For over 55 years, UW Health has led the nation in serving transplant patients, both adults and children, and living and deceased organ donors. I was in expert hands.

My long day of testing started with handing over my prized bag of urine (the bag had to be tossed because I hadn’t screwed the lid on tight enough!) and having 15 vials of blood drawn.

After the blood draw and a complimentary breakfast, I met with a nutritionist who assured me there were no concerns with my A1c (diabetes screen), lipid panel, or blood pressure. She declared me a “good nutritional status for donation.”

The 10 hours of tests and interviews continued with a chest x-ray and an electrocardiogram. Dr. Wang, one of the kidney surgeons, reviewed my past medical history, surgical history, social determinants of health, current vitals, and physical exam, and counseled me on the donation process and its potential risks. Her notes concluded, “I think she may be a suitable candidate for kidney donation.”

When I finished answering the social worker’s questions about my support systems and my living and work arrangements, I was getting fatigued. She summed up in her notes that “patient is a low-to moderate-risk psychosocial candidate for living donation.”

Next, I spent an hour with Dr. Swanson, who was pleased with my metabolic and electrocardiogram test results. Finally, I met Melissa in person for the first time. She walked me to radiology for my last test of the day, a CAT scan.

Because I was asked by everyone I met with why I wanted to donate a kidney, I was able to say Connor Jones with a smile many times throughout the day.

When Dane and I left the hospital at last, I was starving and thirsty! Dane was content—he’d finished his book while waiting for me.

My case was to be reviewed at their next Wednesday meeting, and on Friday Melissa would be calling me with the good news.

By now we knew, because of my age, I wouldn’t be a direct candidate for Tom, but giving my kidney to someone else meant Tom would move up on the waiting list, a huge deal to him and his family.

On Friday, Melissa called. I’d been turned down to be a donor.

In reviewing my CAT scan, Dr. Swanson noticed one kidney was larger and one smaller. Both had cysts, and so did my liver. I was referred to a nephrologist at Gunderson Health in La Crosse, where I learned I have stage 2 chronic polycystic kidney disease (PKD). Not a biggy, because there are 5 stages. Our guess is my dad was the carrier. He died at 53 from a brain aneurysm, which can result from PKD. My next step was a brain and neck scan—no signs of an aneurysm—and I'm scheduled for a genetic counseling evaluation.

So now I need you to step up and become a donor. You’ll have the best donor team to work with and the best testing imaginable. More important, you’ll give someone like Tom the gift of seeing his children grow and taking them fishing. For more information on being a donor or sending a donation, go here: www.uwhealth.org/transplant  

Make sure to tell them Connor Jones sent you.