On the waiting list

A ten-minute phone call saved Mike Stetzel’s life.  

On the other end, Stetzel’s donor coordinator told him he’d receive the kidney he’d been waiting on for four years to cure his polycystic kidney disease. 

Stetzel, father of 2016 Ball State alumna Courtney (Stetzel) Bishop, was one of more than 120,000 people on the national organ donation list waiting for a transplant in 2014 — the year the number of patients reached its all-time high. 

But the donation didn’t come from one of 40 friends and family members who got tested to determine if they were a match. Instead, the lead trainer for PayProTec received his kidney from a late 20-year-old male who died from a drug overdose. 

“I’ve been a donor since the first time I could get it on my driver’s licence,” said Stetzel, a Warsaw resident. “It was a no brainer for me to check the box, and now it’s a donor that’s allowed me to continue my life with my family.”

As of February 2020, more than 112,000 people are still on the waiting list, and more than 1,200 of them are Hoosiers. Stetzel was one of the lucky ones, but Keith Wilgus, father of Ball State freshman Savannah Wilgus, wasn’t as lucky. 

In 2009, Wilgus said her father was diagnosed with pulmonary fibrosis — scarring of the lungs. He was put on the donation list, but three years into treatments, he had to have open heart surgery. As a man in his early 60s, Wilgus said, he was not able to regain health after the operation, so he was taken off the donor list. 

Keith Wilgus died in late October 2015, leaving a wife and six children. 

“In my opinion, there’s no bad effects of being an organ donor,” Savannah Wilgus, social work major, said. “If my dad had been able to receive a new pair of lungs, I wouldn’t have had to be one of the few teens who lost their parent early on. I don’t want anyone to have to go through what I went through at 14 years old.”

Each year, the number of people on the national waiting list continues to steadily increase beyond the number of registered donors and the number of successful transplants, which is also on the rise due to improvements in medicine. In Indiana, only 667 of the more than 1,300 patients received the organ they were waiting for from 198 donors. 

The number of donors remains the lowest statistic because many people and their families have reservations about organ donation, according to the Health Resources & Services Administration. For Brian Waters, a funeral director at Waters Funeral Home in Hartford City, Indiana, one of those reasons is people are worried organ donation will affect the way they are able to honor their loved ones, and they aren’t sure what their family member’s wishes were. 

“Not knowing is one of the big reasons. It’s just human nature for us to wonder what our family members would have wanted, even though, in reality, it has no effect on them,” Waters said. “There’s nothing we can do to a deceased individual that will make them more comfortable, but we innately believe there is.

“One decision organ donation may affect is the clothing you place on your loved one. It may also affect the timely fashion in which you bury or cremate your loved one because there are often delays. But, that’s it.”

In the past, Waters said he has not always been an advocate for organ donation because the communication between organ procurement organizations and funeral directors has been less than poor. He said he has had families come into the funeral home, and because of the lack of communication, he can’t tell them the status of their loved ones — making the funeral directors the “bad guys.”

To instigate change, Waters joined the advisory board for funeral directors three to four years ago and started “Undertaking: The Podcast,” where he and Ryan Ballard, a funeral director in Yorktown, Indiana, educate people about topics related to funeral directing. 

“I decided I was going to look at the big picture and that started the relationship between the Funeral Directors Association and the Indiana Donor Network,” Waters said. “I started understanding their mission more; it really opened my eyes that they are saving and enhancing lives, and that is paramount. But, I learned funeral directors play a vital role in helping save lives because we are the ones reassuring families that their decision to donate is not going to affect them in a negative way.”

Waters said he encourages families to have a conversation with one another about their wishes related to end-of-life decisions, including if they want to be a donor, where they want to be buried, etc. It’s disheartening, he said, to watch families struggle through decisions when they are trying to grieve. 

“Not that it lessens people’s grief, but it’s something positive they can get behind. It adds some positivity to a negative situation,” Waters said. “For me, I don’t want to give instructions from the grave because I have seen that trouble so many families, but my wife knows that I am a supporter of organ donation, so I trust that she’ll take that into consideration if something happens.” 

A conversation is exactly what got Kirk Wolfe started as one of 300 advocates for the Indiana Donor Network. His son died in August 2009 from respiratory distress, but a few months before, Wolfe said, his son asked if he could be an organ donor even though he had muscular dystrophy. 

“When I was approached about the possibility of him being an organ donor after he died, I knew that was something he wanted, so I consented. It was much easier to make that decision knowing it’s what he wanted,” said Wolfe, a Delaware county resident. “Within the next year, I went through training, and I have been an advocate ever since.” 

Wolfe works with two main offices for the Indiana Donor Network, Fort Wayne and Indianapolis, where officials schedule him to speak at health fairs or in nursing classes at Ball State and Anderson College. 

“Most people I talk to are already registered as donors,” Wolfe said. “Those who aren’t often throw out the religious aspect, ‘Oh, my religion doesn’t allow it,’ but I’ve found out from research that in most cases that isn’t true. Sometimes people think they are financially responsible for the surgery, and I just try to give people pamphlets and let them know what I went through.”

Since he has been an advocate for roughly 10 years, Wolfe has started talking about organ donation in his everyday life. For example, he said he often strikes up conversations at the grocery store because donating “is such a wonderful gift.”

“When people are unsure about registering, I always tell them to imagine themselves as the one who needs a life saving transplant. You know, put themselves in their shoes,” Wolfe said. “Because I have never met a recipient that wasn’t extremely grateful or one who would forget the sacrifice that happened for them to be able to continue living. They always seem to have a new outlook on life, a new persona. It allows me to know that my decision with my son just means all that much more. Becoming an advocate helped me with my healing process.”

Grateful seems inadequate a word to describe how Stetzel feels about his kidney transplant, that, he said, is serving him well. 

During his four-year battle with polycystic kidney disease, Stetzel thought he was going to receive a transplant twice before he actually did. A friend of his from church volunteered to get tested to give one of his kidneys, and he kept Stetzel informed each step of the way. He was a match, and he made it through all of the physical tests but wasn’t able to pass the psychological exam. 

“My friend’s wife was a stay at home mom for their four kids, and they only have one vehicle right now. It was the psychiatrist’s job to make sure he thought about every scenario,” Stetzel said. “So, the doctor asked him what would happen if his recovery time was longer than expected, and he wasn’t able to go back to work ontime to make an income. Who would provide for his family? That really freaked him out. 

“You never want your friends to have to worry about providing for their kids, but it was just a punch in the gut. I’m a very forgiving guy, but I know my mom and grandma were upset because we were all counting on it.”

Roughly a year later, Stetzel received another positive phone call and was sent to Lutheran Hospital in Fort Wayne for final testing. His family took him out to celebrate that night, but around 3 a.m., his donor coordinator called and said the doctor wasn’t comfortable using the kidney after he saw it in person. Stetzel said he was grateful for the doctor’s cautious perspective, but it was another “huge disappointment” for his whole family. 

“In the moment, it was really painful to hear the doctor say the kidney wasn’t good enough,” Bishop said. “But I think, ultimately, it’s good that these doctors are able to be so objective. It might have been a short term fix for my dad, but long term, it wouldn’t have been very helpful.”

While her father was sick, Bishop said her family tried to stay positive, and even created a media campaign for Facebook to spread the word about their story and “bring some humanity to it.” She said it gave her family hope that they would be able to find a donor, and even though it didn’t work, it still connected them with so many support groups. 

“I think in my case, I could have gone to hemodialysis indefinitely. You go to the clinic for three days a week, forever,” Stetzel said. “Getting a new kidney allowed me to have more energy. When you’re on hemodialysis you can’t go swimming, play on the softball league for church, go on vacation or even get on the ground to play with your kids. I get to be a dad to my two younger children. I am a donor myself, and even though I won’t be able to donate my kidney when I die, I hope I can help someone the way I’ve been helped.”

Contact Tier Morrow with comments at tkmorrow@bsu.edu or on Twitter @tiermorrow. 

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