Two Chicago-area women desperately search for a living kidney donor: ‘I'm going kicking and screaming'
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.'
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Chicago Tribune
7 days ago
- Chicago Tribune
Volunteers, friends vow to carry on work of late Chicago LGBTQ+ activist: ‘We're her legacy'
Bobby Foster sobbed all day Monday, but there wasn't a doubt in his mind that he'd be back to work the following morning. He has to go on, he said, no matter what. 'If we have to do it with tears coming out our eyes, we gotta do it,' Foster, 57, said. Tuesday marked Foster's first volunteer shift at GroceryLand, the long-running Edgewater food pantry for HIV-positive people, without the pantry's steadfast linchpin, Lori Cannon. A fixture of LGBTQ+ activism in Chicago and the driving force behind GroceryLand, Cannon died at home Aug. 3 of heart failure, a close friend told the Tribune. She was 74. Less than 48 hours later, the doors of GroceryLand's 5543 N. Broadway brick-and-mortar stood open, as grieving volunteers returned to do what they had for years done side by side with Cannon: serve the community. They wouldn't have had it any other way, the volunteers said, as they vowed to carry on Cannon's legacy. 'This was her dream,' Foster said. 'This was her goal.' Born in Ravenswood and raised in West Rogers Park, Cannon established what would ultimately become GroceryLand 37 years ago amid the AIDS epidemic of the 1980s. Eleven years after AIDS was first reported in the United States, it was the leading cause of death for U.S. men ages 25 to 44. HIV disproportionally affects people in vulnerable populations that are often highly marginalized, stigmatized and criminalized, including the LGBTQ+ community, racial and ethnic minorities, women and girls, drug users and sex workers, according to the World Health Organization. 'I didn't understand what was happening,' Cannon told the Tribune in 2004 of the epidemic. 'But I knew I didn't like it. The horror, the heartbreak we experienced … and no one was paying attention.' Cannon turned to organizing, becoming an early volunteer for Chicago House, which provides a range of services for people and families affected by HIV, and helped launch the city's local chapter of the national AIDS Coalition to Unleash Power, according to the Chicago LGBT Hall of Fame. In 1988, Cannon co-founded Open Hand Chicago to deliver meals to people with AIDS. Six years later, Open Hand expanded to food pantries where clients could shop for their own free load of groceries, with the idea that they'd come away feeling more empowered in the process. GroceryLand was born. Over time, the operation evolved, being renamed Vital Bridges in 2001 and 10 years later, becoming an arm of Heartland Alliance Health, whose parent organization split apart last year amid financial turmoil. In February, Heartland Alliance Health itself was on the brink of closure before receiving a multimillion-dollar donation that saved the organization from shutting down. Still, through it all, GroceryLand remained, with Cannon at the helm. 'Lori Cannon was a true ally in Illinois from her organizing days to founding Open Hand Chicago — she led the way with chutzpah and humor,' Gov. JB Pritzker wrote in a statement to social media recently. That tenacity was palpable Tuesday, living on through the GroceryLand volunteers and clients Cannon leaves behind. 'We don't know what tomorrow's going to bring or how it's going to turn out,' Foster said as he wiped his eyes, his voice wavering. Foster initially came to the organization as a client when it was still known as Open Hand, after he contracted HIV at 20 years old. From Florida, he fell in love with Chicago from the moment he saw 'two guys walking down the street holding hands … and it seemed normal to them,' he said. Cannon gave Foster the 'guidance of the mother that I never had,' he said, sitting in GroceryLand's reception area as clients filtered in and out with canned goods, grains and vegetables in hand. All around, pride flags lined the pantry's walls while overhead, a doll resembling Cannon hung from angel wings, though the effigy had been part of the pantry's decor long before Cannon died as a standing homage to GroceryLand's 'guardian angel,' volunteers said. 'Will it be the same?' Foster said. 'Will we have the same support from the community? She knew so many people. She had so many connections. … Only time will tell. (But) the need is there.' Chicago artist David Lee Csicsko said he'll be a part of GroceryLand 'until I'm gone.' For more than 30 years, Csicsko has produced artwork for the pantry to liven the space and turn it into somewhere for not only 'nourishing your body but your mind and your soul and your heart,' he said. 'The constant thing was just making something that makes people smile.' That was important to Cannon, who exuded kindness and humor and knew every client that walked through the door by first name, Csicsko said. Today, GroceryLand, with the help of some 30 volunteers, serves a few hundred regular clients, volunteer Maria Mavraganes said. Mavraganes, 60, met Cannon when she was 16 years old, after she and her family, who had owned a restaurant in Lakeview for years, became involved in advocacy efforts early on in the AIDS epidemic, she said. When she retired four years ago, Mavraganes said she formally joined GroceryLand so she could volunteer 'for the community that gave so much to me and my family,' an opportunity she owed to Cannon. 'It's because of Lori and on Lori's behalf that we're all here.' she said. When client Frank Frasier took a bad fall last year and tore a tendon in his leg, it was Cannon who kept in touch and ensured he'd still receive his groceries, he said. A friend introduced Frasier, a longtime survivor of HIV, to GroceryLand seven years ago, and he's been a client, as well as a part-time volunteer, since. Cannon had this ability to 'make you feel like you're the most important person in the world,' said Frasier, who lived in Edgewater for 24 years but now lives in the suburbs. 'She never turned anybody away. Never. Whether it was a day's worth of food or a week's worth of food or whatever, even if they weren't a client, she didn't turn them away.' Frasier said it was always Cannon's hope that someday, GroceryLand wouldn't be necessary anymore. He referenced a 2016 article by the former hyperlocal news website DNAinfo Chicago, in which Cannon was quoted as saying, 'I hope to hang up the shingle on my front door that says, 'We're going fishing, we're closing our doors, the need is not there, it's been a pleasure serving you all.'' Frasier said that dream still stands. 'I don't want (her legacy) to be a dusty plaque someplace. I want it to keep living and breathing. … We're her legacy. The people here,' he paused, choking up, 'are her legacy. Clients, the people working.' Cannon's 'unwavering commitment to nourishing both bodies and spirits made Vital Bridges a lifeline for thousands,' Tamashiro continued, adding: 'We are profoundly grateful for (her) decades of leadership and love.' Tamashiro said Heartland Alliance Health is 'taking time to thoughtfully consider next steps for GroceryLand, ensuring that any decisions reflect the care, community and values Lori brought to her work every day.' Longtime Chicago performer Angelique Munro, who knew Cannon for 16 years, said the focus among Cannon's close network is 'the future of GroceryLand and the LGBTQ+ community' especially amid today's political climate. Heartland Alliance Health, which relies on federal funding for an estimated 20% to 30% of its annual budget, has been closely monitoring 'proposed changes to federal funding with concern,' Tamashiro said, though he added that the organization is 'on strong financial footing' and 'well-positioned' to continue delivering care. For the past 15 years, Munro, 55, has held an annual Thanksgiving food drive for GroceryLand to ensure that clients could take home a holiday meal. She plans to keep the tradition going this fall. Cannon was like a mother to Munro, whose own mother died in 2006, she said. Losing Cannon has 'shattered' her, but 'we just have to continue on,' she said, 'because that's what she would want. … It's all about honoring her and keeping her memory alive.' On that Tuesday afternoon, Derrick Fox walked towards GroceryLand with a black suitcase rolling behind him on the sidewalk. 'Are they servicing today?' the 63-year-old asked. 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Chicago Tribune
08-08-2025
- Chicago Tribune
Weiss hospital, set to lose Medicare funding this weekend, appears closed. Supporters to rally this afternoon.
Weiss Memorial Hospital appeared to close Friday morning, just a day before it was scheduled to lose Medicare funding. The emergency room and other facilities closed as of 7 a.m., emergency room registered nurse Daniel Maser said. Three other hospital staffers, who asked to remain unnamed, told the Tribune Thursday that the facility was slated to close. The hospital was quiet on Friday morning, and one person was seen walking out of the facility with a cardboard box. Dr. Manoj Prasad, the head of the company that owns the hospital, and other hospital officials did not respond to requests for comment Thursday. Prasad is scheduled to speak at 11:30 am today at a news conference at West Suburban Medical Center in Oak Park, which his company also owns. Maser said he was told of the closing two days ago by his direct supervisor. 'A lot of people are panicking and scrambling to find jobs,' Maser said of the Weiss hospital staff. 'It's brutal,' Maser said. 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It would be difficult for any hospital to keep its doors open without Medicare and Medicaid funding, and especially so for Weiss. In 2023 about 88% of Weiss' inpatients and nearly 67% of its outpatients were on Medicare or Medicaid, according to the Illinois Health Facilities and Services Review Board. This week, a number of local elected officials and community organizations wrote a letter to the Centers for Medicare & Medicaid Services asking for an eight-week extension and a reevaluation of conditions at Weiss before the hospital's Medicare participation is terminated to give the hospital more time to become compliant with the agency's standards. 'Our communities stand to lose not only a critical healthcare provider, but also a key employer and stabilizing force in the Uptown neighborhood,' they wrote in the letter. Signers included Ald. Angela Clay, 46th; Rep. Kelly Cassidy, D-Chicago; Rep. Hoan Huynh, D-Chicago; and Sen. Mike Simmons, D-Chicago, among many others. 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Chicago Tribune
07-08-2025
- Chicago Tribune
Concerns swirl about potential closure of Weiss hospital, which will lose Medicare funding this weekend
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The state health department said in a statement Thursday that no patients were currently housed at Weiss. The department said it was continuing 'to monitor developments around the status of Weiss Memorial Hospital.' The Illinois Department of Healthcare and Family Services confirmed Thursday that if the hospital loses Medicare funding, it will also lose Medicaid dollars, under federal regulations and state law. It would be difficult for any hospital to keep its doors open without Medicare and Medicaid funding, and especially so for Weiss. In 2023 about 88% of Weiss' inpatients and nearly 67% of its outpatients were on Medicare or Medicaid, according to the Illinois Health Facilities and Services Review Board. This week, a number of local elected officials and community organizations wrote a letter to the Centers for Medicare & Medicaid Services asking for an eight-week extension and a reevaluation of conditions at Weiss before the hospital's Medicare participation is terminated to give the hospital more time to become compliant with the agency's standards. 'Our communities stand to lose not only a critical healthcare provider, but also a key employer and stabilizing force in the Uptown neighborhood,' they wrote in the letter. Signers included Ald. Angela Clay, 46th; Rep. Kelly Cassidy, D-Chicago; Rep. Hoan Huynh, D-Chicago; and Sen. Mike Simmons, D-Chicago, among many others. The elected officials said in the letter that they've convened emergency meetings with leaders at Weiss, the state and city health departments and officials from the mayor's office, among others, to help find solutions. 'It's been a critical safety net hospital for working families and seniors and communities of color, immigrants and refugees, and so we want to make sure that this hospital is here to stay,' Huynh told the Tribune. Ruth Castillo, with the Lakeside Area Neighbors Association, said that if the hospital closed, it would be 'heartbreaking.' 'It's such an important resource for the community,' she said. 'There are so many neighbors that are on Medicare and Medicaid. They won't have a resource (that's) walking distance or a short bus ride away.' She said, however, she thought years ago that something like this might happen. The hospital has gone through a series of ownership changes in recent years. A previous owner, California-based Pipeline Health, agreed several years ago to sell a Weiss parking lot to a developer, angering community members who worried, in part, that it was the beginning of the end for Weiss. 'A hospital that has a future plan is not going to sell the last bit of land that it has to develop,' Castillo said. Pipeline later sold Weiss and West Suburban Hospital in Oak Park to a new company called Resilience Healthcare led by Prasad, who touted, at the time, his ability to turn around struggling hospitals. 'Over the past 30 years I've had the privilege of leading numerous health care organizations and have rescued a number of challenged facilities,' Prasad told the Health Facilities and Services Review Board in 2022 as he sought to buy Weiss and West Suburban. WBEZ and the Chicago Sun-Times first reported news of the hospital's potential closure.
