Wisconsin doctors help organ donation patients get new life
By NATHAN PHELPS
Nov. 11, 2017
MILWAUKEE (AP) — Sara Everts and her husband took a yellow Ford Mustang convertible to visit Arizona and Nevada.
In March, Everts, 50, got a new liver from a deceased donor and vowed to live her life to the fullest in the wake of the operation, necessitated by a rare bile duct cancer. The transplant was her only chance for survival.
She told her story last month to an audience of three — a pair of transplant coordinators and her transplant surgeon — as they gathered in an exam room of the Center for Advanced Care at Froedtert & the Medical College of Wisconsin. The three have been with her throughout her unexpected medical journey of almost two years, and, she says, have become part of her life.
There are similar stories at transplants centers across the nation. Getting a patient like Everts through a transplant can be a long and involved process. Dozens of people, from nutritionists to pharmacists and people specializing in finance, all play vital, if quiet, roles in getting the patient to the operating room and on with his or her new life. And through the appointments, procedures and follow-ups, patients and some on the team of medical professionals are in such close and frequent contact that they can develop a bond that lasts long after the transplant surgery is complete.
USA Today Network-Wisconsin reports that Everts is one of 140 patients who has received a new liver in Wisconsin this year. There are about 2,100 people on waiting lists for organs transplants in Wisconsin.
Nationwide, more than 116,500 people are in need of a transplant, according to the Organ Procurement and Transplantation Network. On average, about 20 people die each day around the country awaiting a transplant.
At the center of the process for Everts were transplant coordinators Shannon Sova and Kate Kopsi at Froedert & the Medical College of Wisconsin, both of whom worked directly with her. The job is described as the "quarterback" of the transplant team, serving as a resource for patients and physicians alike.
Everts, a West Allis resident who has been married to her high school sweetheart for 22 years and is a corporate marketing and communications manager for Rite-Hite Holding Corp., waited about a year for a liver. She compares Sova's and Kopsi's role to that of a reference desk librarian, someplace she could turn for answers before and after the transplant.
She recalled the first meeting with the people who would help her.
"I remember Shannon saying, 'We're here to help you, any questions you have, you can ask; call us at any time,'" she said. Their sense of confidence and openness "stayed with me throughout all the chemotherapy and the treatment."
Everts' story is part of a multi-week USA TODAY NETWORK-Wisconsin series, in conjunction with Froedtert & the Medical College of Wisconsin and Green Bay Packers wide receiver Randall Cobb, highlighting stories about organ, eye and tissue donation in an effort to increase the number of donors in the state.
Sova, a pre-liver transplant coordinator, is the first contact people have with transplant team staff and works with patients from the time they are referred until they receive a transplant. Her job manages the care of the patient: ordering tests or diagnosis imaging; lab work; and assessing their health.
"They have this huge team they meet with and they get that team all the way through until they are transplanted," said Sova, who has worked in the transplant arena for the last 14 years, including four years at Froedtert. "They have one-on-one access to me through the whole transplant process and I think that alleviates their concerns because we're like family going into it. We become very close to them."
Patient education is a critical part of the job. Most patients come in with no idea of what to expect, the dos and don'ts, or even how to get — and stay — on a waiting list for a transplant. Almost every phone call to a patient involves some form of education, Sova said.
It's also a part of the job both said they enjoy.
Kopsi, a post-liver transplant coordinator who grew up in the upper peninsula of Michigan, said staff enter the lives of patients and their families at a very scary and difficult time. She described it as an "honor" to be part of the team and part of the lives of patients. She and her co-workers in the post-transplant role will follow up with patients for the rest of their lives.
"We're a team for life," Kopsi said.
Sova and Kopsi, both registered nurses, say they ride the highs and lows with the patients. Some transplants can take years to happen, and some never do because the patient dies before an organ is available.
Dr. Johnny Hong, director of the Transplant Center at Froedtert & the Medical College of Wisconsin, said coordinators are the "unsung heroes of the program." They're also an asset to physicians.
"Their work is never ending," Hong said. "They have to digest the medical aspect of the disease and then spend a lot of time explaining why we're doing this or doing that, and what are the options we have."
Sova is on a team of two that has about 150 patients, while Kopsi is part of a four-person team with each managing about 100 patients.
The jobs combine clinical knowledge, including diagnosis and medical history and treatment plans, with a bit of cheerleader that can provide encouragement when transplant wait times extend to years or recovery isn't as fast as expected.
"It's really nice to see them come back three months, six months or even a year down the road and say 'Wow, you were right, we got to that point,'" Kopsi said about recovery. "Or a couple years down the road where I have patients saying they don't even remember they had a transplant most days."
Help for those coping with loss
Organ recipients and transplant staff are acutely aware the death of someone else provides the organs involved in many transplants. The donor and their families are not forgotten in the process.
University of Wisconsin Health, one of four transplant centers in Wisconsin, offers the help of Christine Monahan, the donor family services coordinator with the Organ and Tissue Donation program. She's there for the family when a loved one dies, through the intervening months, and again when donor and recipients correspond and, sometimes, meet.
Like Sova and Kopsi, Monahan said it's humbling and an honor to help families through tough times. She's been with UW in this role for the last decade. It's a job that provides both emotional and practical support.
"Let's say somebody dies and they were the breadwinner in the family, then I go through problem solving with the family, what's your most immediate need? And then connect them with county services and services for their children," Monahan said. "But you're also listening to their concerns and providing them guidance."
She and others create an atmosphere where families can share stories about their loved love and honor the donor.
"It gives meaning to these families to know that we care and it gives meaning to them to know their son's life saved someone else," Monahan said. "It helps them put together their own grief journey and story going forward."
For donor families, there can be solace in knowing the decision to donate helps others.
"A lot of families leave the hospital with this empty suitcase, they leave with the death of their loved one and there's this loss," Monahan said. "Donor families, if there's a recipient on the other side, they're given this amazing gift for their family to have this legacy in the life of someone else.
They can say, 'My loved one's life mattered so much so that somebody else is alive because of them.'"
Monahan sees both ends of the transplant process. She's there when a donor and their family start the process, and when those families meet the recipient.
"These families want me to help them find their path and see the light at the end of this horrible tunnel they've been thrown into," she said. "I like to think I do that in some way, every single day."
Everts said the trip to the southwestern United States was a celebration of life for the couple and made it the couple's best vacation. Among the details, large and small, she told her transplant staff about, were some of the road signs, different than those in Wisconsin. The mountain lion crossing, or the mountain ram — they reminded her she was in a different place.
Everts still sees her medical team on a regular basis, like the recent appointment where she talked about Arizona.
"I feel like if something not right, I have someone I can call immediately and they will pay attention to me. They are part of my fabric," she said.
The team behind Everts remains there in her new life, educating her about the medications she's on, how — or what — she eats and advice on travel and other aspects of her new life. They also tell her to enjoy life.
"I feel the responsibility I have to my donor is to carry on and live a good life, and pay it forward," she said.
Information from: Press-Gazette Media, http://www.greenbaypressgazette.com