Two Chicago-area women desperately search for a living kidney donor: ‘I'm going kicking and screaming'

Yahoo

2 days ago

Katie Pappas had kept a secret for weeks from her students at northwest suburban Timber Trails Elementary. The 40-year-old health teacher's kidney was failing, and she spent around eight to 11 hours every night tethered to a dialysis machine.
Eventually, the time came to confide in her students, and she explained that their usually bubbly, upbeat teacher was struggling. Her kindergarteners at the Hoffman Estates school didn't understand kidney disease, but they did understand pollution, Pappas said.
'So Miss Pappas' kidney is not cleaning the pollution in her blood, that's why I'm tired all the time. We understand that,' Pappas said. 'Fourth grade and up, they know the body systems.'
Pappas, described by her family and former students as a 'giver,' 'role model' and 'inspiration,' is one of about 3,500 Illinoisans waiting for a kidney transplant in a state where, according to the American Kidney Fund, the average wait time is five to seven years.
But Pappas, along with another Chicago mother of four that the Tribune spoke with, may not have that long to wait. They are desperately searching and hoping for their best option, a living donor.
'God, the universe, whatever, has already decided whether I'm getting a kidney or not, and if this is how I'm going out, I am going to shout it from the rooftops. I'm going kicking and screaming,' Pappas said.
'Maybe that's another reason I'm still here, is because I will talk about this to whoever will listen, to bring awareness to the situation,' Pappas continued. 'It's not (just) me. There's so many people and everybody is worth a chance to live their lives with a new kidney.'
Experts have been sounding the alarm for years on the severe shortage of kidneys available to transplant, with about 90,000 patients across the country waiting for one. There are lengthy waiting lists for deceased donors at area hospitals, from about 310 people at Rush to 800 at Northwestern, according to data from the Scientific Registry of Transplant Recipients.
The other type of kidney transplant is a living donor transplant, which is from someone who has two healthy kidneys, and donates one to a person in need. While these donations are less common, Dr. Raquel Garcia-Roca, an abdominal transplant surgeon at Loyola University, said they are 'far better quality.'
There's more time to learn about the anatomy of the kidney and the donor, including risk factors that may impact kidney function, such as age or diabetes, she said. The kidney also stays outside the body for less time due to advanced planning.
'You don't have to even know the individual that wants to keep your kidney so it's important to be out there and express the need,' Garcia-Roca said. 'Not doing anything is worse than actually trying.'
This isn't Pappas' first go-around with a kidney donation. She was diagnosed with Type 1 diabetes before her senior year of high school, and received a dual kidney and pancreas transplant from a deceased donor about seven years ago. Afterward, she said, she adopted a mindset of 'earning her organs.'
'It's like: OK, I'm still here, I'm still here,' she said. 'What are you gonna do with it?'
For some of Pappas' students, she's more than exceeded this goal. Summer Parker-Hall had Pappas as her fifth grade teacher at St. Helen Catholic School in the Ukrainian Village neighborhood. Parker-Hall, now 22, said she was a talkative, easily distracted student, but that Pappas helped change her mindset and improve her schoolwork.
Parker-Hall remembers Pappas gifting her a cross necklace when she was her confirmation sponsor. Parker-Hall said she lost the necklace after gym class and was scared to tell her teacher. But when she mustered up the courage, Pappas gave her a hug and later bought her a new one. The two grew even closer while Parker-Hall attended Cornell University, she added.
'If I'm going through anything or just need someone to talk to, or just a simple text — I love you, I'm thinking of you, have a great day — it just means so much, especially being so far from home,' she said.
Pappas was also Aaron Trinidad's teacher at St. Helen, and later became his godmother. She helped him bump up his grades, 'completely changing my life,' and when he was an adult took him to his first drag show.
'I felt really loved, understood, I felt seen and really comfortable with her,' Trinidad said. 'It showed me how much she supported me and who I was, especially me being a queer person and coming out at Catholic school. It was everything I needed.'
At the beginning of last year, Pappas said her kidney function rapidly declined yet again, a 'heartbreaking' development. Her best chance at survival, Pappas recalled her doctors telling her, is getting a kidney from a living donor.
Some doctors have recommended she stop teaching while spending hours on dialysis every night, a treatment that's 'very hard on (her) body,' but Pappas knows she'd be depressed staying home all the time. Dialysis filters waste and excess fluid from the blood.
'Two nights ago, I had 29 alarms go off,' Pappas recounted. 'How do you sleep? You don't. You get up the next morning and crawl to Starbucks … but the second the buses come up (at school), it's like a switch in my brain.'
At school, Pappas teaches about five classes a day, and even adopted uplifting affirmations into her curriculum. At the beginning and end of class, students recite, 'I'm stronger than I think, I'm braver than I see, I'm stronger than I feel and I can do hard things.' This spring, she helped out with the school's production of 'The Lion King' before coming home and hooking up to the dialysis machine around 6 p.m.
'I have no regular life. There's no regular life anymore,' she said. 'I don't really have time to, like, go shopping or do laundry.'
Dana Nikoloulis, Pappas' aunt, is just one of her family members who've stepped up to try to find Pappas a kidney, from helping organize fundraisers to running marketing campaigns. Nikoloulis said it's difficult to watch someone she loves, who enjoys ballet and watching the Rockettes as much as she does, struggle so much.
'I know that there's so much more she has to give,' Nikoloulis said. 'She's meant to have this transplant and live a long, fruitful life and inspire others.'
Anyone interested in donating a kidney to Pappas can fill out a kidney donor questionnaire through Northwestern Medicine and enter her name when asked.
With prospective living donors, Garcia-Roca, the surgeon from Loyola, said programs operate under the principle of 'do no harm,' meaning they wouldn't take a kidney to benefit someone else if they believe it could harm the donor.
Donors go through a fairly in-depth process to evaluate their health and support systems, everything from tissue typing to checking that they have family or friends for emotional support, Garcia-Roca said. At Loyola, about 20% of people who express interest ultimately donate the kidney, she said.
'A good donor is an individual that has normal kidney function, it doesn't really matter the age,' she said. 'That has a renal function that we know when we remove one of the kidneys the other kidney will gain enough function to sustain long-term the kidney function overall.'
Christine Hernandez, a 50-year-old former Northwestern nurse and Galewood mother to four, has been searching for years for a donor. She decided to get a kidney biopsy in 2016 because her brothers had kidney disease, and learned that she had lost 60% of her kidney function.
She was also diagnosed with the rare MUC1 kidney disease, an inherited condition that causes her kidneys to shrivel up. Within about four years, or what felt like 'a blink of an eye,' she had to go on dialysis. She spends her free time supporting other kidney patients through various organizations, and is known as a 'very special person' and 'very appreciative' by one advocate.
'Everything I had planned for my future, the trips I wanted to take my daughter on, everything stopped. Everything stopped,' Hernandez said. 'Right now I'm a prisoner of my own body.'
Hernandez has waited on the transplant for six years, but said her doctor believes a living donor is likely the best option because she has rare antibodies. Potential donors for Hernandez can call UI Health Chicago's transplant coordinator Anita Pakrasi at 312-355-9820.
Sometimes Hernandez feels like breaking down and stopping dialysis, especially after she started having 'nightmare' allergic reactions to the treatment. Her face turns red and hives cover her body. But her mom and kids convinced her to keep fighting and holding out hope that her kidney is coming soon.
'My doctor says there's a needle in a haystack and your donor is here in the U.S.,' she said. 'Somewhere.'