‘The will to live is so important’

Quin Taylor grew up watching her dad receive dialysis and live, miraculously, for 15 years after he received a kidney transplant. She had no idea that she, too, would get a new kidney 11 years later.

“Doctors told my father that his life expectancy on dialysis was one to three years, and that, if he wanted to start a family, he and my mother should do so ASAP,” said Taylor, a Chatham native who lives in Bronzeville.

Then Taylor watched as her father, Eddie Taylor, lived to see and celebrate her birth, her first birthday, and her graduations from kindergarten, eighth grade, high school and college.

“To think that I could be one of the motivations [for her father’s long survival] — the will to live is so important,” she said.

At age 16, Taylor offered her dad one of her kidneys. Doctors told her she was too young, and her dad refused a transplant for years, saying it would be no cure.

But he went through the process of getting listed for a transplant after his wife (Taylor’s mother) encouraged him. And he got the call in November 2000 that he had a kidney donor — a deceased person whose identity he never learned.

Two years later, in fall 2002, Taylor, then a sophomore at Iowa State University, started suffering severe edema — her skin would easily tear — and she felt exhausted, had to urinate every 20 minutes and had gained 100 pounds.

A biopsy in 2003 showed that she had a rare disease called focal segmental glomerulosclerosis, or FSGS, that causes kidney inflammation. It results in scar tissue developing on the parts of the kidneys that filter waste from the blood.

She also found out that, besides her father, her grandfather and great-grandmother also had had to take dialysis.

Taylor lost 80 pounds, started taking medication, finished her bachelor’s degree in psychology at Chicago State University and started her master’s degree in clinical professional psychology at Roosevelt University while working full-time as a caseworker for the mentally ill.

UChicago Medicine nephrologist Dr. Mary Hammes, DO, sustained Taylor’s kidney function for the next several years with medications.

In September 2008, Taylor’s kidneys started declining rapidly, and she had to have three fistula surgeries after her blood kept clotting as the kidney disease caused her blood to thicken. She started dialysis on Jan. 18, 2010.

“After two years of dialysis, I decided, ‘This isn’t for me,’” she said. “I was 29. I had a whole life to live. It was so much that I took for granted when I was healthy. I just wanted to live.”

Then she got the challenge of a lifetime. Her dietitian flat-out told her that it would be difficult to lose the weight required to get on a transplant list.

Obesity increases the risks of complications for a kidney transplant, including rejection. That’s why doctors generally require a patient to have a BMI below 42 before they will list them for a donor kidney. Taylor’s BMI was almost 60.

Taylor got busy and proved the dietitian wrong. She used money that her parents had given her for her birthday and joined a Fitness Formula Clubs (FFC) gym. The training director, Chris Jaeger, took Taylor on as a client.

After the club rallied around her, Taylor won “a year of wellness” contest in 2013, and worked with Jaeger on strength training, weight-lifting and a new diet.

She lost 130 pounds, got on the kidney-transplant registry and was told that, being young and healthy, she’d get a new kidney quickly.

Taylor ended up waiting two years.

As she kept searching for normalcy, she was scheduled to start in-home hemodialysis on Dec. 1, 2015.

“I felt overwhelmed,” Taylor said. “I gave all my cares over to God. Then at 3 a.m. Nov. 5, 2015, [UChicago Medicine] called to say they had a kidney.”

“I live 10 minutes away from the University of Chicago,” she said. “I pulled out the [emergency overnight] bag that I had packed two years before and got to hospital at about 5 a.m.”

She spent the entire afternoon working with coloring pencils that a volunteer had given her to complete coloring pages. She went into the operating room at 4 p.m.

“My first clear memory was getting to ICU a little after midnight [Nov. 6, 2015],” she said. “It was like looking at the world for the first time in a long time.”

Taylor’s father died of kidney failure exactly six weeks after her transplant. He’d been a UChicago Medicine kidney patient for 30 years — one of its longest-term kidney patients.

“What makes UChicago Medicine’s transplant program so special is that they care about you beyond just your health,” Taylor said. “During that tough time after my dad died, they were there for me. They made sure I was healthy in spite of everything that was going on around me.

“If I ever need anything, I know that I can reach out to a member of the team and they will graciously help,” she said. “Not because they have to, but because that’s simply who they are.”

Taylor has started her own business, Tayloring Gratitude — and she’s flourishing — helping patients manage their chronic illnesses. She advocates for patients and serves as a health equality consultant for organizations.

She also serves on the board of Nephrologists Transforming Dialysis Safety, and her experiences as a kidney patient have been included in research studies published in medical journals.

“I help rewrite the narrative so they can live the life they want to live,” she said of her passion to help kidney patients become educated and empowered.

“Mentally, I feel strong,” Taylor said. “It’s not a cure. Kidney disease will be part of my life as long as I’m here, but it lets me live the life that I deserve to live. I don’t take it for granted.”

“If this is the part of the story that God wrote for me, I’m equipped with everything I need to get through it,” she said. “I could choose living life being angry, or I could choose to appreciate what I do have. I want to appreciate and be grateful for what I have. I’d rather live in a space where I can appreciate everything that’s around me and know what I can do.

“There’s always light at the end of the tunnel,” she said. “There’s light coming. We have to believe in it and keep moving forward to receive the light.”