Story helps find donor for Chilton man’s transplant

A June of 2017 story that ran in the Tri-County News has helped give a Chilton man a new chance at life.
Bob Benzschawel and his wife Penny spoke in the story of Bob’s battle with Type 1 insulin-dependent diabetes, and how over a 45 year period it had progressed to the point where dialysis or a kidney transplant was needed to save Bob’s life.

With approximately 1,600 people on a kidney transplant waiting list in Wisconsin and only about 200 of those receiving a deceased donor kidney each year, Bob and Penny knew they had an uphill battle ahead of them to find a donor for Bob. “The average wait time for a deceased kidney donor is five years,” Bob said, adding the couple decided to actively search for a living donor for Bob after learning the chances of survival are greater with a living donor transplant.

While Bob began dialysis, the couple reached out to employers, their church, community organizations, friends and family with the hope someone would step forward and be a match for Bob. “A few people called and were tested which is encouraging,” Bob said in June of 2017. Unfortunately, none of those tested qualified because of their own health issues.
“The first month at dialysis I think I started to experience what depression was like,” Bob said. “I looked at Penny and the kids and life and said this is just a temporary thing. Christ gives me strength for today and hope for tomorrow. He helped me I maintained a better attitude and helped me to do what I needed to do to get to where we are today. I can see how easy it would be to give up on life. There’s a lot of time for praying and thinking when you are sitting in dialysis five hours a day.”

Faith and hope endured
As Bob continued to endure dialysis treatments three days a week, the couple’s strong faith in God gave them hope and continued to drive them forward in their search. Bob’s story was published in the Tri County News, where they hoped to reach even more people. That story led them to a living donor right in Chilton.
Barb Wieting of Chilton read Bob’s story and asked her husband Bud if he knew about Bob’s situation because the two men had been Brillion Class of 1972 classmates. “I read the story and I made sure that he read it,” Barb said. “It went from there.”
After reading the story, Bud said he didn’t realize Bob’s health issues. “In high school Bob was more of the athlete and I was the car guy,” he explained. “We traveled in different circles.” Bud said he got to know Bob better years later at Pennelope’s Pizza, a local restaurant run by Bob and Penny, and he got to know Bob even better through gospel music and church activities.
A few weeks later, both couples attended the annual gospel fest held in Hilbert. Bud approached Bob and Penny and asked how the search for a donor was going. “Bob said not so good,” Bud said. “He said everybody who steps forward is either too old or had health issues or they are not a match.”
Bud asked Bob what had to be done to see if someone was a match. “He asked my blood type and I told him and he said that was one of the main things,” Bud said. “Later in the day I asked if he had a contact or someone he could contact. The more the day wore on, I realized how blessed I was with good health.”
Penny admitted to being skeptical when Bob told her Bud had approached him regarding the need for a kidney at Gospel Fest. “I took it nonchalantly because a lot of people would ask and things didn’t follow through. After awhile you don’t really believe anyone is serious.”
Barb said her initial reaction to Bud wanting to donate a kidney was to let Bud know it was his body. “He just told me he was doing it,” Barb said, adding there was never any discussion.
Bud admits his children took the news differently. “They thought I was nuts,” he said.
“They said they could see if he was donating it to a family member,” Barb said. “But to give it to somebody else, that was where they had a hard time.”
Bud said he gathered information and educated himself on the live donor process and needed time to consider what he had learned. “I had to digest it awhile,” he said. “Then I called the UW Health transplant phone number.” Transplant officials interviewed Bud for 45 minutes during the call. “It just progressed from there.”

Meant to be
“Of course I had to think about it some more,” Bud admitted. “Then we just kind of moved on from there. I believe it was a God thing and it was supposed to go forward. So I called back and said what do I have to do next.”
Bob recalled breaking down in tears when Bud said he wanted to be checked to see if he would be a suitable match. “That was the first sign of hope,” he said, choking back tears. “It really was. I just praise the Lord for Bud and Barb and that day.”
Bud traveled to Madison for a day filled with tests. “It was pretty intense,” he said. “The board then makes a decision if I am a suitable donor.”
Bud’s tests came back with positive results, but because he is over the age of 50, he needed to also endure a stress test for his heart. About a month passed before Bud received the call that he had passed that test too.
“It’s mostly on health,” Bud explained. “But once you are over 50, they really scope you out.” Both men are 64 years of age.
“The number one priority of the transplant team is to make sure the donors are safe, “ Penny said. “That is what we are so grateful for.
The testing determined that Bud had only one genetic marker in common with Bob. Bob said he originally had hoped for a donor with two markers or better, which would increase the chance of a successful transplant. “The transplant team said I might not be a suitable donor for Bob, but asked if I would mind being placed in the paired-exchange program.” Bud agreed.
The program would ensure Bob would receive a kidney, although not necessarily Bud’s. More than 50 transplant centers participate in the national program, which greatly expands the donor pool to significantly increase the opportunity to find a compatible donor as kidneys are shared with those that match best.
Bud told Bob UW hospital was sending a kit to him that he would take to the local hospital to have 32 vials of blood drawn. “They send off to eight transplant centers through out the country to find the best match through out the country,” Bud explained. “If they can make the exchanges through out the country they said they could get Bob a better match.”
“I called Bob and told him the good news,” Bud said. “I think Bob called back about five to six hours later and said he and Penny had prayed about it and decided to go with the direct transplant. So he told Madison they didn’t have to send the kit.”
“They are finding more and more that the markers don’t mean as much,” Penny explained. “You can have a perfect match and it can still reject.”

God have given us Bud
Bob said he realized this was a Godsend. “He is right here. Why should I hesitate any longer to try to find something better. God has given us Bud right here.”
A three-way phone call just before Christmas of 2017 between Bud, Bob and transplant officials confirmed Bud’s intentions of donating, which was an early Christmas gift, Penny said.
Scheduling the surgery took a little more work as the Wietings had a few things planned including deer hunting, a cruise in January and taking care of the funeral home when their son Dan and his family were on vacation. The transplant team worked with Bud’s schedule and provided a few dates. “I called Bob and said these are the dates,” Bud said, adding he told Bob he could pick the date as Bud was available for all of them. “He picked March 7.”
“When Bob and I went down together for the pre-surgery exam, I was meeting with the surgeon and I said if I die on the table are you going to take both kidneys out and my pancreas too and give them to Bob so he has a chance of his diabetes being cured?” Bud said. “The surgeon got mad and said we haven’t had anybody die and it’s not going to happen today.”
Bud said the transplant team does everything in their power to make sure the donor is absolutely certain they want to donate. “They are always asking are you
sure you want to do this, you can say no,” he explained. “Even when you are ready to go into surgery, you can always say no.”
Bud said the four hour surgery ended up to be six hours because once they started the surgery on Bud they discovered he had bifurcated artery on the kidney which meant double the disconnect from Bud and double the re-connect for Bob. Bud’s kidney was also considerably larger than they anticipated. “So I had a larger kidney left and Bob got a larger one to start with which was a double blessing,” Bud explained, adding it also meant two more hours of surgery.
Bud’s surgery was done laparoscopically until the actual kidney removal, which required an incision similar to a cesarean section. “It is a rather invasive surgery for the donor,” Bud said, explaining how organs needed to be moved around to reach the kidney.
A camera was watching Bud’s surgery so the medical team in Bob’s surgical suite could watch on a monitor across the hallway and time everything accordingly with Bob’s surgery.
A hockey stick shaped incision was made to Bob so the kidney could be placed just above the hip socket. “There is a little pocket there that fits a kidney,” Penny said, with Bob stating the connection to the bladder is then much shorter than from the typical location of the kidneys in the back.
While Bud and Bob were in surgery, Penny and Bud’s wife Barb sat in the waiting room wondering what was happening. Arriving at the hospital by 8 a.m., Barb wasn’t able to see Bud until close to 5 p.m. and Penny saw Bob a few hours after that. “It was a long day,” Barb recalled. “The kids were relieved when all was said and done.”
Bud was hospitalized for two days. “Surgery was on the seventh and I slept in my own bed on the ninth,” he said.
Bud had eight weeks of lifting restrictions, but he said the worst part was not being able to drive for three and a half weeks. “That was the toughest part,” he said, adding he didn’t quite understand the driving restriction until right after the restrictions were lifted and he took his truck and trailer to his son-in-law’s home. “The rough and long ride then took me about three days to recover from,” he said. “It was about seven weeks before I was really starting to feel better.”
Bob was hospitalized for seven days and admits he struggled after the surgery. “It was overwhelming, really,” he said, adding he woke up from surgery preaching to his children about protecting their health.
Part of his restrictions included no bending. Penny was right there by Bob’s side, putting socks and shoes on him daily. “Finally that restriction was lifted but I was so concerned that I was going to damage the kidney, so we really took it easy and careful.” Bob said simple things like climbing stairs and getting in and out of a vehicle took major effort and care. “Slowly but surely,” he said. “My energy level is still low. I still take a nap every day.”
Barb thinks Bud tires out more easily since the surgery also. “They told me at the check up that it takes about 18 months for that to come back,” Bud said. “The more physically active you are, like if you are a runner, it takes even longer to get back.” Bud said he isn’t a runner, stating, “I see joggers and I say if I were in that big of a hurry I’d take the car.”
“A lot of people ask if Bob is no longer a diabetic,” Penny said. “He’s still a diabetic. A kidney transplant doesn’t take care of that. That would be pancreas.” “It’s another opportunity to educate people on the role of the kidney and the pancreas and diabetes,” Bob added.
Bob will still be on insulin for the rest of his life to control his blood sugar. “My A1C is the best it’s ever been. You want to keep that as low as you can as a diabetic.”
Post surgery, Bob is now taking 26 pills a day instead of the 36 he started with and the doctors continue to tweak his medications based on blood draw results.
Bob said one of the changes after surgery is a less strict diet. “For a long time I couldn’t have some of the things I really like,” he said, adding there were good reasons for the strict diet including being in the best physical condition possible in order to receive a new kidney. “I encourage people on dialysis that you have to look at what you eat and get those numbers where they need to be so when you get a call you’ll be healthy enough to receive it.”
“It’s good to have people know Bud’s story because there could be more people that would consider donating knowing somebody that gave a kidney,” Penny said. “There were a few people that avoided us when they knew Bob needed a kidney. We laugh about it because we get it. It’s a scary thing.”
“I believe it was a God-thing, I’ve been healthier enough through the years,” Bud said, giving full credit to his wife Barb for helping him lead a healthy lifestyle.

Give now if you can
Bud said he does not have the box checked on his driver’s license to be an organ donor. “I guess I never was a big believer in doing that after you were dead. This was an opportunity. I guess if I had a third kidney I’d probably do it again. I guess once I decided that it was the right thing to do I had no reservations at all after that.”
“Somebody asked me after how I was doing and said they really wished they could be a donor,” Bud continued. “I asked if their health was good and she said yes but she didn’t know of anyone to donate to. I said go park your car by the dialysis center, You’ll probably find somebody you know. Even if you aren’t a match, you do the paired-exchange and they’ll find a match for that person.”
“If your health is good and you think you might want to do this, it’s worth doing. Don’t wait until you’re dead,” Bud said. “You never know what’s going to happen.”
It’s been five months since the transplant and Bud said he has no regrets. “At first when you talk about doing it, you think about it and weigh out everything when you’re first considering it,” he explained. “Thanks to Barb I don’t have the health issues and it’s a blessing not to have that.”
Bob also gives major credit to his wife for helping him maintain his health over the years and said he is looking forward to what the future holds.
“For someone like Bud to give a part of himself, it’s a selfless act of love,” Bob said. “He’s thinking of someone else.” Right after surgery, Bob said he referred to his new kidney as Bud’s kidney. Bud corrected him, saying I gave it to you, Bob and it’s yours now. “Take good care of it,” Bud said.
Tears filled Bob’s eyes as he said it’s important to never lose hope and never stop believing. “I believe that God is in control of everything and everyone and I need to always look to Him for each day, the next breath and be so grateful and thankful for people that are wiling to give like Bud gave and have the heart that he has. They look at life for what it is, a special gift given to all of us from God.”
“Hopefully this will give other people hope,” Penny added.
The couples keep in touch and occasionally have lunch together. They also plan to get together on the anniversary of the transplant. “March 7 will be in my head and heart forever,” Bob said.
“Consider it while you’re alive because it can make all the difference to someone else. You will be giving someone a second chance at life like Bud gave me,” Bob said.
“I believe it’s the right thing to do. There’s great reward in seeing Bob recover and knowing he doesn’t have to go to dialysis three times a week and even knowing his A1C is down to 6.6,” Bud shared. “It’s a victory.”
“It takes somebody with a real compassionate heart to give a part of their body. Not everybody can do that. If anyone can even think they can do that they should try,” Penny said. “Don’t give up hope. There are people out there like Bud.”
“We want to hear someone say that they saw this article and decided to donate,” she added.
“If you feel moved to do it, definitely move forward. You won’t regret it,” Bud confirmed.
“I’m ever so grateful each day. Thanking and praising God each day for everything. My health is good and I am so grateful for that and to Bud,” Bob said.

More information on becoming a living donor can be found by visiting www.uwhealth.org/transplant/living-kidney-donor-program/10577.