In 2003, the non-profit Donate Life America and its partners designated April as National Donate Life Month in an effort to encourage Americans to register as organ, eye and tissue donors.
Various local, regional and national activities are held throughout the month to promote the gift of donation and also celebrate those lives saved through organ and tissue donation.
In an effort to further advocate organ and tissue donors, we bring you a three-part series focusing on Michelle, a former type-1 diabetic who was the recipient of a kidney in 2004 and a pancreas three years later. Michelle is a DeKalb resident and the mother of Vitalant marketing lead Kathleen, whom you will meet in the second part of the series. The series concludes with the story of Elsa, who agreed to donate one of her kidneys to Michelle.
Part 1: The Recipient — Michelle
Michelle was not exactly eager to start the seventh grade.
The DeKalb-native had just moved across town and would be leaving behind her friends at Huntley Middle School for the unfamiliarity of Clinton Rosette Middle School.
“I was in a new neighborhood and didn’t really know anyone and one day I’m outside and out of nowhere pops this girl named Elsa and we became immediate friends,” Michelle said. “We’ve been great friends ever since.”
Little did Michelle know that chance encounter with Elsa would end up saving her life.
Three years later when Michelle was 15 years old she began experiencing cases of extreme thirst, fatigue and rapid weight loss. “No matter how much water I drank, I was always thirsty,” Michelle said. “I had the classic symptoms of diabetes.”
A trip to the doctor and a blood test confirmed Michelle’s self-diagnosis.
“A normal person has a blood sugar level between 80 and 120, mine was at 650,” she said.
Michelle was diagnosed with type 1 diabetes, a disease in which a person’s immune system mistakenly sees insulin-producing beta cells in the pancreas as foreign and attacks and destroys them.
Taking the diagnosis about as well as anyone could expect, Michelle said she vowed to follow her doctor’s instructions.
“I was like ‘OK, I have this and I know what I have to do,’” she said. “I studied up [on diabetes] in health class and took my insulin shots and followed the diet, but I found out there’s a lot more to it than that. This was 1977, and while a lot of the treatment equipment like disposable syringes and recombinant DNA insulin had made it easier for a type 1 diabetic, the physiological and psychological aspects of the disease were not well acknowledged. It was hard for me to stay on track sometimes.”
Type 1 diabetes did little to slow Michelle down while she was a student. She continued to play sports and participate in cheerleading. She would go on to graduate DeKalb High School and then Knox College in Galesburg.
She does recall a “very scary” incident while she was pregnant with her only child, Kathleen, in 1987. Michelle was diagnosed with pre-eclampsia, a pregnancy complication characterized by very high blood pressure, about six months into the pregnancy and had to be on bed rest for around eight weeks.
Michelle ended up giving birth to a healthy baby, but fast forward to around 2000 and years of high blood pressure and diabetes had essentially “destroyed” her kidneys. “By the time I was 38 I was always extremely tired and could barely walk,” she said. “I could just feel my body being polluted and it literally left a bad taste in my mouth.”
Doctors ordered Michelle to go on peritoneal dialysis, a form of dialysis done at home during the night.
“It was always somewhat uncomfortable but it allowed my remaining kidney function to be preserved so that I could lead a somewhat normal life,” she said.
She was also told a kidney transplant would be the only way for her to regain the mobility and health she had prior to being diagnosed with diabetes.
There was only one problem. A compatible donor could not be found.
“Both of my parents and my friend Don were tested and neither one was a match, and I wasn’t going to ask my teenage daughter to get tested,” she said.
Michelle said Elsa “had enough” of her good friend being unable to find a donor, and, along with her partner Paige, agreed to get tested. The results came back that both Elsa and Paige were compatible, with the former being a slightly better match.
“I told Elsa she didn’t need to do this and even called her mom and told her she can’t let her daughter do this,” Michelle said. “Elsa just told me her entire family was behind it. Once I heard the family gave their blessing, I felt better but I still told Elsa she didn’t have to go through with it right up until she was taken into the OR.”
After a few months of testing for Elsa, Michelle had her kidney transplant at the University of Chicago Medical Center in December 2004. In addition to donating a kidney, Elsa also gave a pint of blood for Michelle which doctors used during the procedure. A blood donation from Elsa was important, doctors said, because it was less likely to be rejected during Michelle’s surgery.“It was an absolute success,” Michelle said of the kidney transplant. “My family told me they had never seen me look better. Elsa was able to walk into my room in the ICU that evening.”
A few years later doctors told Michelle it was time to replace her pancreas, which she said had been “dead” since she was diagnosed with diabetes in 1977.
On two separate occasions in December of 2007 doctors called Michelle and instructed her to come into the hospital because they believed a match had been found only to decide against the transplant at the last minute. Then right around Christmas of 2007 Michelle once again got a call from doctors telling her a match had been located. This time the procedure was a go and Michelle had her new pancreas, and doctors soon after told her she no longer had type 1 diabetes.
“I felt like a completely new person,” she said. “When I turned 50 it didn’t feel like I was turning 50. It felt like I was 30.”
Life is now pretty good for Michelle. Since 2010 she has owned Gone to the Dogs, a DeKalb-based dog daycare, grooming and training facility. Last spring she was also able to see her daughter get married.
“Organ donation saved my life,” the 55-year-old said. “There are too many misconceptions about organ donation that prevent people from agreeing to be a donor, but I’m all for it. It was a wonderful gift.”
Part 2: The Daughter - Kathleen
If Michelle ever lamented the fact she was a type 1 diabetic and in need of a new kidney and pancreas she certainly didn’t do it in front of her daughter.
“Mom always pretended everything was fine,” said Kathleen, Michelle’s daughter and the marketing lead at Vitalant. “She put on a strong face even though she was very sick.”
That strong face was never more evident than on Dec. 7, 2004, when Michelle had her kidney transplant surgery at the University of Chicago Medical Center.
“Even while she drove to the hospital she kept saying everything was going to be fine,” Kathleen said. “She was doing everything she could to make me not worry about her.”
The kidney transplant came more than a quarter-century after Michelle was diagnosed with type 1 diabetes at the age of 15. No matter how positive Michelle remained, it couldn’t dismiss the fact her body was deteriorating. By the early 2000s doctors told her a kidney transplant would be necessary, but finding a donor proved to be a challenge, Kathleen recalled.
“I remember it took a pretty long time before a match was found,” Kathleen said. “It was difficult [to see her wait for a donor] because my mom wouldn’t let me get tested. She told me that I was too young and it was too great of a health risk. I understood, but it was still difficult.”
After a series of tests, doctors eventually determined Michelle’s childhood friend, Elsa, was a compatible match.
“I’m so grateful for what Elsa did,” Kathleen said. “She had never had a major surgery or even been under anesthesia before. It was amazing for her to do this.”
Elsa had been in Kathleen’s life since she was born, but this generous gift helped form a close friendship with Kathleen that remains to this day. Kathleen said she and her mother frequently join Elsa and her partner, Paige, for dinner or drinks, and Elsa and Paige were readers in Kathleen’s wedding ceremony last year.
A few years after the kidney transplant, doctors told Michelle it was time to replace her pancreas. The helpless feeling Kathleen experienced while her mother waited for a kidney transplant returned as doctors searched for a pancreas. To make matters worse, on two separate occasions in December 2007 doctors called Michelle to the hospital for the pancreas transplant only to later determine the organ was not a proper match.
“It was awful,” Kathleen recalled of the two false alarms. “I felt so bad for my mom because on the second occasion, she was prepped for surgery and put under anesthesia only to have the doctors wake her up and tell her [the pancreas] wasn’t a close enough match.”
With Michelle near the top of the pancreas transplant list she received another call that month from her doctors about a possible match. The third time was the charm and Michelle had a successful pancreas transplant at the end of 2007. Kathleen, however, wasn’t there to lend her support.
“I was in New York on vacation when my grandparents called me and told me my mom was in surgery,” Kathleen said. “I was upset I didn’t know beforehand, but I know she didn’t want me to be worried while I was on my trip.
“I was super happy that she had the surgery and glad that it was over, but sad I wasn’t there for her.”
While the diabetes may have prevented Michelle from being able to take on certain activities, it did not stop her from having movie nights at home with Kathleen, which turned out to be treasured time together, according to Kathleen.
“We both love horror movies,” Kathleen said. “If my mom wasn’t up for going out or if she was hooked up to the dialysis machine we’d stay in and watch a movie. It was fun mother-daughter time.”
As one might expect, Kathleen is a staunch supporter of blood and organ donation and diabetes awareness. Her job with Vitalant enables her to spread the importance of blood and organ donation via the blood center’s social media channels. Kathleen is also an advocate of Donate Life America and a previous participant in the Tour de Cure, a cycling event which raises funds for the American Diabetes Association.
“One organ donor can save up to eight lives,” Kathleen said. “My mom wouldn’t be alive today if it wasn’t for organ donation. I can’t imagine being a teen growing up without my mom. I’m very thankful for Elsa and for all organ donors.”
Part 3: The Donor - Elsa
There was only one dissenting voice attempting to persuade Elsa from donating her kidney, and it just so happened to be coming from the would-be recipient.
But for Elsa there was never anything to contemplate. She had known Michelle since the two were middle school students in DeKalb and for the last 25 years watched as her good friend’s life was altered because of type 1 diabetes. She also saw how doctors were struggling to find a kidney to replace the two Michelle had that were failing more each day. That made her even more determined to move ahead with the kidney transplant surgery after learning she was a match with Michelle.
“My mom and dad, sisters, [my partner] Paige, a bunch of my friends and even my doctor were completely supportive,” said Elsa, noting her friends threw her a surprise party a week before the surgery to celebrate her decision and gave her a charm in the shape of a kidney to add to her bracelet. “But Michelle, well, she kept on telling me I didn’t need to do this. Even on the day of the transplant [she told me I could back out].”
Elsa’s main inspiration for agreeing to donate a kidney was to help save the life of her friend, but that wasn’t the only reason.
“I needed to prove to myself that I could do this,” she said. “I had always been really healthy and never had a surgery or even been under anesthesia.”
The transplant, which occurred at the University of Chicago Medical Center on Dec. 7, 2004, was a success and Elsa vividly remembers walking into the intensive care unit to visit Michelle a few hours after the surgery.
“I went to see her as soon as they let me, and right away I noticed she looked so much better,” Elsa said. “She had her color back and looked much more like herself. It was great to see.”
Elsa said she needed “only a couple of days” to recover from the surgery, and noted she was able to go hiking with Paige during a vacation to California approximately three weeks later.
“I was back to my normal self almost right away and have experienced no effects [from donating a kidney,]” Elsa said. “I was able to run the Chicago Marathon a few years later and even now play in basketball and softball leagues.”
Elsa said being able to save her friend’s life through organ donation was “pretty incredible.”
“At the time [of the kidney transplant] Michelle was not working and not feeling well,” Elsa said. “Now she runs her own business and overall has more energy.”
Michelle also has a pretty good sense of humor when it comes to the kidney transplant, according to Elsa.
“She will come up to me and tell me how my kidney is doing,” Elsa said. “We do joke about it from time to time.”
While Michelle may toss around the occasional joke, she has never forgotten the life-saving gift she received.
“Michelle will send me a thank you card as the anniversary of the transplant is approaching,” Elsa said. “To be honest, I forget that it’s even coming up. I don’t think of [the transplant] as a big deal. I just think of it as helping out a friend.”
Michelle’s daughter, Kathleen, who was just 15 when her mother had the transplant, remains extremely grateful to Elsa for her generosity. Kathleen asked Elsa and Paige to be readers at her wedding last year, and said the four routinely go out for dinner or drinks.
“We have a special bond,” Elsa said of her relationship with Kathleen. “She is so appreciative of what I did for her mother.”