Gifts of Life
Jan 04, 2019 07:57AM
By Anthony Flott
To describe life with cystic fibrosis, Dan Gerdes starts by talking about a frog. Specifically, a frog put into a pot of water that’s slowly brought to a boil.
“It creeps up on you,” Gerdes says. “You just get slowly and slowly sicker and sicker and you never realize how far you’ve come from point A.”
For Gerdes, point A came when he was diagnosed with cystic fibrosis as a baby. Back then, his mother could dislodge the mucus collecting in his lungs by cupping her hand and patting his back. As the disease advanced, Gerdes had to use a long-handled percussor, then a vest that inflated to force loose the thick substance blocking his airways.
The water grew warm, then hot.
Gerdes had to use inhalants. The mucus collected in his stomach, requiring medicine to aid digestion. It attacked his pancreas, and Gerdes became diabetic at age 15. Infections that rooted in his lungs forced occasional hospital stays. By 2012, Gerdes was taking antibiotics intravenously every other week and enduring hour-and-a-half long treatments three to four times a day. He was coughing up more than a liter of mucus each day.
The disease ravaged his body, then his spirit.
“At first, I was pretty positive. I was involved in all kinds of sports and stuff. I wasn’t going to let it beat me,” Gerdes says. “But as it got worse and worse, it got darker and darker. Like to the point where I just felt worthless because I couldn’t contribute anything.”
The water was nearing a boil. Gerdes was dying.
The only way he could live, though, was if somebody else died. Gerdes needed that person’s lungs to replace his own diseased ones.
This life-saving exchange happens quite often. In the United States, 34,770 organ transplants were performed in 2017 (244 of those in Nebraska) according to Nebraska Organ Recovery.
Dr. Alan Langnas, a transplant surgeon at Nebraska Medicine and director of the Center of Transplantation for the University of Nebraska Medical Center, has performed more than 1,000 liver transplants in his 30-plus-year career. With each operation, he is mindful of the deep sacrifice that made it possible.
“At the end of the day, what makes this incredibly special is the deceased donor and families making difficult decisions at a difficult time,” Langnas says. “Or living donors making donations and willing to lay on an operating table and give people an organ for someone they don’t know.”
Currently, more than 114,000 people in the U.S. are waiting for a life-saving organ transplant—400-plus in Nebraska. This year, more than 7,000 of them will die.
Gerdes is among the fortunate. His story, and others, illustrate the good that can come from grief, life from death.
Lungs for Dan Gerdes
Gerdes was dying, but he kept telling himself that “I was not that bad.” So when doctors in 2014 told him he needed a lung transplant, “It kind of broadsided me.”
His reaction after that might surprise some.
“For a long time I told myself that I never wanted to get a transplant because of that really dark aspect of my life that I just thought…I wasn’t producing anything with my life,” Gerdes says. “That I didn’t deserve it.”
But during yet another hospital stay, Nebraska Medicine doctors convinced him to begin the long process of testing to see if he was a viable recipient candidate. On Aug. 4, 2016—Gerdes’ 27th birthday—he was put on a waiting list for a set of lungs.
Just five days later, he was called to the hospital—new lungs were waiting for him. The transplant was successful. Today, Gerdes breathes easy. “It’s night and day,” Gerdes says. “There’s really no comparison. I don’t have to do those treatments, and I have more energy than I ever did since I was a child.”
It was the loss of someone else’s child—Bryan Clauson—that gave him life. An IndyCar driver, Clauson died from injuries sustained during a national midget car dirt track race in Kansas. He died at Bryan Medical Centre in Lincoln, Nebraska. He was 27.
Gerdes first heard of Clauson a few days after his transplant. A friend had learned of Clauson’s death and organ donation. He called Gerdes to ask if he now had “race car driver lungs.”
“I thought he was kind of trolling me,” Gerdes says. “I hadn’t heard anything about Bryan Clauson.”
Soon thereafter, Clauson’s family wrote an introductory letter to Gerdes. But Gerdes’ mother, in the hecticness of the operation and a move to Bellevue to be closer to her son, misplaced the unopened letter. She found it about a year later. Gerdes read it on Dec. 24, 2017. The next day, Christmas morning, he sent a Facebook message to Clauson’s father, Tim. Four months later, Gerdes met the Clausons at a charity walk in Bellevue.
“It was kind of nerve-wracking to an extent, because the event still I struggle with,” Gerdes says. “How do you tell somebody thank-you that has given you your entire life back but at the same time it was somebody they loved an extreme amount? It’s really hard to tell them thank-you enough.”
He thanked them in part simply by breathing. A nurse who had been with Clauson at his death also was at the reunion. She brought the stethoscope used to listen to Clauson’s heart and lungs during his final moments. Clauson’s family used it to listen to Bryan’s lungs pumping strong and steady in Gerdes.
“One of the first things I explained to them is how it sounded really clear,” Gerdes says. “Before that my cystic fibrosis lungs would have sounded like a lot of cracking and popping.”
It was the sound of life.
Bryan Clauson’s Family
Life changed irrevocably for Diana Clauson and her family the day her son, Bryan, died. “You just sit there and it’s stuck in your face a lot, death in general,” she says. “Especially when you’re not prepared.”
That said, the Clausons have talked frequently about how different—in a worse way—their lives would be had Bryan had not been an organ donor.
“As tragic and as devastated we were as a family, when we left that hospital knowing he was going to help five lives continue, that was this little light at the end of a very, very dark tunnel. I think what turned my corner was just knowing that he was able to help these people continue their life. Otherwise, I think I’d still be in a pretty dark place.”
The Clausons since have devoted themselves to turning Bryan’s selfless act into thousands of other selfless acts as they encourage others to become organ and tissue donors. His sister, Taylor, now works for the Indiana Donor Network, which started the organization Driven2SaveLives to promote organ donations as a partnership with IndyCar driver Stefan Wilson (whose brother, Justin Wilson, died in a racing accident in 2015). Bryan was the second driver honored through the program. His parents have also become active advocates for organ donation and often speak at races and other events.
They’ve been wildly successful, too. In the two years since Bryan’s death they’ve had more than 8,000 people sign up to become donors—a huge number in the industry.
Really, though, the Clausons only needed one life saved to have realized healing from the tragedy of Bryan’s death. That came with their first encounter with one of the five people who received one of Bryan’s organs, Dan Alexander of Papillion.
“It was pretty overwhelming,” Diana Clauson says. “Hearing Brian’s heart beating again…that was probably the best part of it all.”
A Heart for Dan Alexander
A retired lieutenant colonel with the U.S. Army Signal Corps and a veteran of Operation Desert Storm, Dan Alexander has a particular fondness for the military credo, “Leave No Man Behind.”
Bryan Clauson, Alexander says, did just that:
“I told Bryan’s dad, ‘Every breath I take, I try to honor Bryan for what he did.’ He did not leave me behind. He could have. He could have not checked that box. But he didn’t. He’s my hero.”
Alexander, who was physically fit, had needed a new heart since July 2013, when he suffered a massive heart attack. “What some people call a widow maker,” he says. The medical team fought four hours to keep him alive. Three times, his heart stopped. When he awoke from a coma 10 days later, he was told it was a miracle.
Another miracle was to come.
Alexander lived for nearly three years with his heart regulated by a left ventricular assist device. He also was put on the waiting list for a new heart. On Aug. 9, 2016, Alexander got the call—it was time to get a new heart. The surgery went well and his recovery has been “incredibly good.” He was out of the hospital in nine days and has not been back for a stay since.
He’s also become a racing car fan.
Clauson’s family first met Alexander in April 2017 at Alexander’s house. An ESPN film crew was on hand to document the moment. Diana Clauson listened to her son’s heartbeat inside what until then was a stranger.
“Incredibly beautiful. Satisfying. Lots of tears of joy,” says Alexander, 65. “There were a lot of stories told that afternoon. What I took away from that day is we’re committed to each other.”
Living Organ Donors & Kidney Chains
Gerdes’ worry that he wasn’t worthy of a transplant echoes in what people asked Sue Venteicher when they learned she was giving up one of her kidneys—to a stranger.
“I’ve had people ask me, ‘What if you found out it went to someone who was in prison?’” Venteicher says. “I said, ‘So they should be in pain and their family should have to worry about them dying?’ One person is not more important than another person.”
Venteicher sparked donations impacting not just one person, but 18. In February 2016, she was part of the largest living-donor kidney transplant chain in Nebraska history. A kidney chain matches donors with compatible recipients. Venteicher started the chain when she decided to donate her kidney in memory of a friend’s son who had died from kidney failure. Nine patients received kidneys from nine living donors over five days of surgeries at Nebraska Medicine.
Venteicher, a wife, mother of seven, and grandmother, was home two days after the surgery and felt fully recovered within two months. “In some ways, I’m healthier than I was two years ago,” says Venteicher, who recently retired after a long nursing career. She hates water but drinks more of it than ever to make sure her one kidney filters efficiently. She’s lost 20 pounds. “I think I appreciate my body a little bit more.”
So does Dennis Molfese of Bennet, Nebraska—the man who received Venteicher’s kidney. Molfese had been on a kidney transplant waiting list for more than three years. But he was running out of time. Molfese’s kidney was functioning at 4 percent. His blood pressure was running 240/180. If he didn’t die from kidney failure, it could have come from a devastating stroke.
Molfese’s friend, David Hansen, offered his kidney, but was not a match. In stepped Venteicher.
“She is my hero,” Molfese says. “An incredibly selfless individual who literally put her life on the line for someone else. In Susan’s case, I was a stranger, not even a name. Just someone in need of a special part of her body that she decided to give away, even at the risk of her own life.”
Hansen’s kidney went to another recipient in the 18-person chain. The 18 donors/recipients met five months after the transplants. Molfese and Venteicher didn’t get to speak a lot that day, which included a press conference and perhaps 200 or more family members in attendance. “I was thrilled to see he looked so well,” Venteicher recalls.
Molfese already had written a letter to Venteicher. “He wrote that the hardest thing about being sick was to look into his wife’s eyes and see the pain and the worry and concern every single day. Now, since he had his kidney, he sees nothing but joy in his wife and excitement for the future.”
They’ve become friends. When Molfese received an award related to his work as a neuropsychologist at the University of Nebraska-Lincoln, he invited Venteicher to the ceremony. She sat with his family.
“Without Susan, I definitely would not have been alive to be nominated or to receive such a once-in-a-lifetime honor,” Molfese says.
The Gift That Keeps Giving
Cindy Schabow missed out on her cruise, but she would have missed out on a lot more had she not received a heart transplant in May 1987.
Her own heart had been slowly dying since 1981 when it was weakened by a virus. The damage was discovered while she was pregnant. Schabow gave birth to a daughter and lived with relatively stable health for the next five years. “I continued to work and live life and take some medicine but really didn’t think much about it,” she says.
But then her heart began to weaken, requiring a pacemaker. That went well for about a year before her heart became enlarged and sicker. Her cardiologist said she needed a new heart.
“I said, ‘We’re going on a cruise this summer, and when I get back we’ll talk about it,’” Schabow recalls. “She said, ‘You will die by the end of the summer if you don’t get a new heart.’
“The idea of a heart transplant was so beyond anything I ever thought about. That got my attention.”
On Memorial Day 1987, Schabow flew to Baylor St. Luke’s Medical Center in Houston to wait to have the procedure. But she grew sicker and sicker. She was put into ICU. “I could pretty much tell we were toward the end of the line,” she says. After eight weeks of waiting, Schabow was notified that a heart had been donated—and just in time.
“They told me I wouldn’t have lived for 24 hours without the transplant,” she says. “It was immediate joy. I’m going to get to live to see my daughter grow up. At the same time, profound sadness since I knew the only reason this could happen was someone lost somebody very precious to them and had made this amazing, generous decision to let me have this heart.”
The heart came from a 15-year-old Louisiana boy who had died in a swimming accident. “I didn’t find out much more than that,” Schabow says. She wrote the family on occasion but never heard back. When she reached 30 years with her heart, she decided to write again and let the donor’s family know the heart, amazingly, is still going strong. She did a bit of detective work and was able to connect with the donor’s sister.
They talked on the phone, texted, and became Facebook friends. They’re planning to meet one day soon.
“They were happy to hear a part of him still lives,” Schabow says. He was athletic and a talented football player, Schabow’s been told. He was friendly and outgoing.
He would be a middle-aged man now. Had he not donated his heart, he’d only be remembered by his family. Maybe a few friends.
Instead, after 31 years, he is still remembered as a hero across state lines in Nebraska. Schabow will never forget him. Neither will her daughter or grandchildren.
“I’m just very, very privileged to carry on his heart,” she says.
Organ Donor Reasons
One deceased organ donor can save up to eight lives. One tissue donor can improve the quality of life or save an additional 100 people. Nebraskans appreciate this. Research conducted by Nebraska Organ Recovery in fall 2016 indicated that 98 percent of Nebraskans support organ and tissue donation, but only about 56 percent of eligible Nebraskans are registered. Why aren’t more individuals registered?
Here are answers to some misunderstandings/misconceptions (provided by Nebraska Organ Recovery):
- I’m too old to register/donate. Anyone 16 or older can register for deceased organ donation. There are no upper age restrictions.
- I have a health issue that prevents me from registering/donating. There are no medical conditions that restrict someone from registering as a donor.
- I’ve used illegal drugs and/or I smoke and drink alcohol regularly. Use of illegal drugs and excessive smoking or drinking does not disqualify someone from donating. Drinking and drug use can impact specific organs, but oftentimes other organs and tissues are still viable.
- I can’t give blood, so I can’t donate. The majority of individuals who are restricted from giving blood can still donate organs and tissues.
- I can’t afford donation. There is no cost to the donor’s family for donation.
- I can’t have an open-casket funeral if I’m a donor. A viewing or open-casket funeral is almost always possible following donation. Surgical incisions are covered by clothing and great care is taken to ensure the donor’s appearance is as normal as possible.
- I can only register at the DMV. Although the majority of individuals register while obtaining their driver’s license, anyone can register (or update their registry) online anytime at nedonation.org.
In 2017, 6,187 people in the United States were living donors. In Nebraska, a living donor must be at least 19 years old. There is no fee for an individual to be screened for living donation. To be screened for living donation in Nebraska, contact Nebraska Medicine at 800-401-4444 or 402-559-5000.
Below is a list of organs that can be donated, and the number of patients waiting for them in the United States and Nebraska (in parentheses):
- Kidney: 102,701 (204)
- Liver: 14,034 (152)
- Pancreas: 903 (14)
- Kidney/Pancreas: 1,669 (6)
- Heart: 3,900 (58)
- Lung: 1,458 (1)
- Intestine: 248 (19)
Visit nedonation.org for more information.
This article was printed in the January/February 2019 edition of Omaha Magazine. To receive the magazine, click here to subscribe.
Correction: the print edition of this article incorrectly attributed the creation of Driven2SaveLives to Bryan Clausen's family and the Indiana Doctor Network. Although the Clausens are active with the organization, Bryan was the second IndyCar driver and organ donor to be honored through the program (not the first). Driven2SaveLives started as a partnership between the Indiana Donor Network and IndyCar driver Stefan Wilson after his brother, Justine Wilson, died in a racing accident in 2015.