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Springfield Journal-Register: Organ donor, recipient find friendship, bond after transplant

Zach Roth | State Journal-Register

Before Diana Wasem of Springfield made the choice to donate a kidney to a complete stranger last November, she got skeptical but understanding looks from friends and family who she told about the upcoming procedure.

As she gathered as much information as she could, she asked a friend for his opinion on going through with the procedure. The response she got surprised her – and then motivated her.

"He straight up told me, 'No, you can't do this, Diana,'" Wasem said. "I was really taken aback because everybody else was like, 'Oh, you want to do what?' He straight up said, 'No, you can't do that. You're such a generous person, you can't just give up your own body to someone you've never met before.' When he said that to me, I realized how much I actually wanted to do it. Even hearing that adverse reaction helped solidify the decision for me."

Adverse or not, Wasem went through with donating one of her healthy kidneys to Jason Johnson of Virden. The procedure went well and both have fully recovered, and through it, the two have found a kind of bond and friendship that can only come from sharing an intense, life-saving medical procedure.

From Thanksgiving dinner to numerous text conversations, Wasem and Johnson have become close friends, starting from one Facebook post about a man in need of a new kidney.

A quarter century spent with a sick kidney

Johnson was diagnosed with a diseased kidney in 1993 and doctors managed to stabilize his condition to the point where he had 30% kidney function for nearly 25 years.

However, in 2017, Johnson's kidneys began to fail. That 30% function began to drop to around 15%, which was enough to put him on a waiting list for a transplant. His first experience with a transplant came when a mother-in-law offered to provide him with a kidney, which didn't take.

"The kidney only lasted for 12 hours," Johnson said.

Diana Wasem and Jason Johnson stand in front of Springfield Memorial Hospital on Wednesday. Wasem donated a kidney to Johnson. The procedure was done at Memorial Health. Thomas J. Turney/State Journal-Register

With failing kidneys, Johnson began to become increasingly fatigued, barely able to complete two days of work as an electrician with Virden-based Lewis Electric. He went on dialysis for a year and a half, which took a lot out of him.

"Dialysis took a lot of time and (I was) feeling weak (and) not able to do stuff," Johnson said. "I was doing it four times a week, so I couldn't really work. I tried to work if I could on the days that I couldn't do it."

With Johnson still in need of a healthy kidney, his family swung into action, posting on Facebook that he needed an organ donation. Wasem, who just so happened to be friends with Johnson's half brother, Seth Cox, saw the post and contacted her friend to get more information.

"He referred me to Jason's wife, who gave me more information," Wasem said. "He was registered at Memorial (Hospital's) transplant center and I could contact the nurse to get more information. From there, I talked to the nurse and contacted my doctors and tried to get as much information as I could about it."

Within eight months of those conversations, Wasem was finally given the go-ahead to donate one of her healthy kidneys to Johnson, with the procedure set for Nov. 9.

Patience and preparation

According to Marc Garfinkel, a transplant surgeon with the Southern Illinois University School of Medicine who works with Memorial's transplant center, it takes 4 1/2 years on average for a person to receive a kidney transplant, although this amount of time can vary depending on a variety of factors.

"The most important factor is that there are so many more people who need organs than there are organs available," Garfinkel said. "The allocation of any given kidney when it becomes available is dependent on multiple factors, but one of the factors is how long a candidate has been waiting or has been on dialysis."

Who gets to the front of the line in terms of kidney transplants usually depends on what condition the diseased kidney is in. Garfinkel pointed out that someone with a glomerular filtration rate below 20 and/or on dialysis gets priority over someone without those two conditions.

"If it goes below 20, policy allows for those candidates to begin to accrue waiting time," Garfinkel said. "It's not clear if someone with a GFR of 20 or 19 immediately needs renal replacement therapy, either in the form of dialysis or a kidney transplant. But by the time you hit 20, you're pretty close."

While transplants are a safe and effective way to correct a problem with a body part, they aren't perfect. Garfinkel and the staff at the transplant center work to prepare donors and recipients for the procedure through face-to-face meetings with staff, ongoing communication between doctors, nurses and patients, along with a transplant orientation class designed to educate people on what to expect.

Still, he points out that there's no way to really prepare people for every possibility during a transplant.

"We do our very best by spending extensive time by offering the transplant education class," Garfinkel said. "The class has a feedback quiz at the end to make sure the key messages have been learned."

Diana Wasem and Jason Johnson in the courtyard of Springfield Memorial Hospital on Wednesday. Thomas J Turney/State Journal-Register

A procedure and a meeting

Wasem and Johnson's procedure took much of the day to complete, with Wasem being in the procedure for over four hours. Two separate surgeons were in the room with the two of them to ensure that Johnson's second chance at a good kidney was successful.

Thankfully for both of them, the procedure went as well as could be expected. Wasem recovered nicely from her transplant with no discernable decline in energy. After a recovery period, she got back to doing the things she loves, such as hiking and running.

"I knew that it would be six weeks (after the procedure) before I was able to lift anything over 10 pounds," Wasem said. "There's Facebook groups online for donors and through reading about their experiences, I knew I would be tired, but you don't know what it's like before you go through it. Not being able to get up for hikes and go for walks and exercise is really tough on me, but I would get up and walk every day.

"It started with just around the hospital (and) when I got home, I would go around the block, turn around and go back. It got farther and farther every day."

With a healthy kidney, Johnson now feels more energized and able to return to a normal work schedule. He's still getting used to having more in the tank, but he feels the difference between what he was before the procedure to now.

"(My) energy is the biggest thing," Johnson said. "(I'm) eating better."

With the procedure complete and the two recovering, Wasem decided to head over to Johnson's hospital waiting room to meet him for the very first time in the wee hours of the morning on Nov. 10. Johnson barely remembers the interaction as he was still under the influence of anesthesia, but Wasem recalls that it was short, but sweet.

"I poked my head in and went, 'Hi, I'm Diana. I'm the one who gave you a kidney,'" Wasem said. "I was really tired, so I turned around and headed back to my room. (He) was sitting in a chair and (he) went, 'Hi.'"

From there, a relationship began to grow. Johnson's family maintained a line of communication to Wasem, checking in on how she was recovering and if she needed anything. His mother even helped out by getting someone to shovel Wasem's driveway.

"We definitely were messaging each other to see how it was going," Wasem said.

His family also took time to invite Wasem to Thanksgiving dinner shortly after the procedure. Both were still feeling the effects of the procedure, but each enjoyed the chance to meet face-to-face and continue their relationship.

"We were moving a little bit slow," Johnson said.

"But my appetite was back," Wasem noted.

Finding familiarity in dark times

The kind of friendship Johnson and Wasem have developed is similar to those Illinois Secretary of State Jesse White has heard about in his 24 years running the office.

White's passion for promoting organ donation comes from his experiences of knowing the effects a donor can have on a person's life. In 1981, White's brother had an aneurysm and White was asked by a representative of Gift of Hope if they could use his brother's organs for donation purposes. At the time, White thought organ donation programs were experimental and because he did not know how his brother's organs would be used, he rejected the offer shortly before his brother passed away.

A decade later, White's sister was in need of a new kidney and he remembered the conversation he had with the Gift of Hope representative. He and his family put his sister into the organ and tissue donor program and within two years, she had a new kidney that helped extend her life by 28 years.

In his tenure as secretary of state, White has made organ and tissue donation a key part of the outreach the office does for the public. Employees ask visitors seeking driver's licenses, IDs or car tags if they want to join the Illinois Organ/Tissue Donor Registry.

During White's travels around the state in his 24 years in office, he's heard from many people who have either donated an organ to help a friend or family member out or who have developed a friendship from organ donation.

"I've seen a lot of people like that, who have been given a second chance at life from a friend, a loved one or a family member who had a good kidney or part of the liver," White said. "I went out to New Lenox and a teacher donated a kidney to her student. A pastor donated one of his kidneys to one of his parishioners. There are a lot of people out there of good will who want to give us a second chance at life or improve the quality of life."

Now dear friends

The COVID-19 pandemic has affected how many times Johnson and Wasem can meet, even if they continue to talk on a regular basis. The two met up with other transplant donors and recipients at Memorial's recent 5K run/walk for transplant patients, getting an opportunity to swap stories and meet others who have gone through similar procedures.

Proximity helps the two stay close, with Wasem working with the Illinois Department of Innovation & Technology in Springfield and Johnson getting back on track in Virden. He readily admits that had his donor been someone from far away, he might not have been able to build the same kind of friendship that he has with Wasem.

"If we're going to be doing things together, nothing's stopping us versus me getting a transplant from another state and someone I didn't know," Johnson said. "She knows she can always call me for anything."

In a sense, Wasem has come to think of Johnson as a member of the family. All it took was one selfless act for that to be realized.

"He and his wife have been so sweet to me, checking in on me and keeping up with me to see how I'm doing," Wasem said. "It's been really nice."

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