Joan Cary 2018-08-20 17:21:56
A Home for Families Undergoing Transplants Takes Care of One of Its Own
Ben and Liz Leuenberger sat in quiet conversation at the dining room table in Wisconsin’s Restoring Hope Transplant House.
The day was young, but they knew at any time they could be welcoming others to join their “family” of transplant recipients and caregivers who stay at the house while getting medical treatment at the University of Wisconsin. The Leuenbergers, long-time residents now on the other side of that storm, would be there with open arms, just as others were there for them.
“There are a lot of times when this is full,’’ says 41-year-old Ben, a recovering heart and liver transplant patient, waving his arm over the table for 12.
The table at center stage in the grand Victorian is where guests start their day and where they unwind from it. It gathers strangers, creating friends the way kitchens collect and connect people at parties.
“It’s a support group right here,” says Cindy Herbst, the home’s founder and executive director, busy doing her paperwork nearby. “It all happens here. People come here as strangers and leave as family.”
Restoring Hope, supported by the Middleton Lions before becoming a sanctioned Wisconsin Lions project, is just minutes from UW’s Health Transplant Program where more than 1,000 organ transplants have been done this year.
Cindy, a Middleton Lion, and her husband, Brian, bought the six-bedroom home to open as a nonprofit in 2013 after staying in a transplant home near Minnesota’s Mayo Clinic where Brian’s dad was undergoing treatment. They knew the Madison area was in need of something similar.
“Unfortunately, the economy went to heck soon after,” recalls PID Peter Cerniglia, a Cross Plains Lion in Wisconsin. Cerniglia suggested to the Middleton Lions that they take on the house as a project, and the club put US$35,000 into getting it open, up, and running. Then Cerniglia, his wife, Lion Joann Cerniglia, and Cindy started traveling around the state to club meetings and district conventions to enlist the support of more Lions, Leos, and Lionesses.
Since then, clubs throughout Wisconsin and northwestern Illinois have come through in a big way. Lions have contributed more than US$540,000 toward the US$1.2 million goal to renovate and expand, adding bedrooms and private baths. They hope for work to begin next spring.
In the meantime, Lions, Leos, and Lionesses meticulously maintain the property. They mow the lawn, wash windows, paint, change tires for guests in a rush, and more. They regularly drop off food and stacks of household supplies and toiletries, and they have sent money to help pay utility bills and buy breakfast food.
Some people might compare the old house to a bed and breakfast, but with an extra-large dose of compassion. Cindy likens it to a Ronald McDonald House (which houses the families of children in hospitals), but for transplant families.
“If I just wanted to rent rooms, I’d run a hotel,” she says. But she doesn’t just want to rent rooms. She wants to improve lives. Guests from 36 states and five countries have stayed with them, and all have one thing in common: the need for a new organ or a bone marrow transplant. Meeting others in the same boat is a huge bonus, the guests say. So is the low cost of US$45 per night.
Guests can use the laundry facilities and cook in the kitchen, and every morning they get up to Cindy’s homemade breakfast. While some may have the means to eat out, others may have already been through the overwhelming heartbreak of losing their home or farm to unforeseen expenses.
“They come and they have nothing left,” says Cindy. “How do people deal with this? Not being able to be home to parent their children? Not knowing where the money is coming from? After seeing the differences in the families who come, I thought it best to start the day with everybody on the same level.”
Shortly after breakfast on that Saturday, after many guests had departed for hospital visits and appointments, the Van Dyne and Fond Du Lac Lionesses appeared at the door, armed with mops, brooms, and buckets. After a bunch of hugs for Cindy, they were soon scattered about the house engrossed in spring cleaning. Before the question of lunch could come up, more Lionesses, this time from the Madison Monona Lioness Club, arrived and set out lunch for everyone at the dining room table.
“Don’t they just rock, these Lionesses?” calls Cindy from the dining room.
The Leuenbergers have witnessed this kind of Lion support in the home for a long time now. They planned to stay for seven days but have been living at Restoring Hope for nine months since Ben’s simultaneous heart and liver transplant, and Liz’s pancreas transplant. They hope to go home to their friends’ house in LaCrosse when Ben’s anti-rejection medications are regulated.
When the young couple arrived in Madison last year, Ben was in congestive heart failure and unaware that a tumor on his liver would require him to have a liver transplant as well. Liz, who was diagnosed with Type 1 diabetes at age 9, was beginning to lose awareness of dropping blood sugar levels, and was having episodes of partial blindness. She stayed at the hospital with her ailing husband, and then in a hotel until there was a room for her at the house. And as Ben recovered, she prepared for her unexpected surgery.
“It’s just been a blessing,” she says of the home and its people. “We’re so lucky this is here, that they’re all here. To be able to talk to people who understand, or to not talk about it. It’s a real blessing.”
Cindy says at least one of the six bedrooms is always taken by someone like Liz, someone with diabetes. “We have all seen the ravages of diabetes here, and the transplants that are a result of it. The work Lions are doing for diabetes is not just necessary. It’s crucial.”
Besides bedrooms, the house offers large living spaces and porches, areas where folks can watch the Packers, play games, and relax together or alone. On that sweltering Saturday, the Leuenbergers found a spot of shade and a friend—Cindy and Brian’s son, Eric—to play a game of “bags.” Eric lives onsite to help guests, day and night, but he also befriends them.
Very early that morning he took an Iowa couple to the Farmers’ Market in Madison before dropping them off at doctor appointments. He is good, the guests say, at helping in unspoken ways; in making them laugh.
“We have all seen the ravages of diabetes here, and the transplants that are a result of it. The work Lions are doing for diabetes is not just necessary. It’s crucial.”
“This is the help I need, but I would never ask for it,” says Cindy quietly.
She had also been to the hospital early that morning. In a strange twist of fate, her husband, Brian, who has emotionally supported so many transplant patients, was diagnosed with leukemia in the spring. In mid-June he received a bone marrow transplant at UW.
“Cindy and Brian have done so much for us. It’s devastating not to be able to fix this for them,” says Liz Leuenberger. “They’re caring and giving, and they’ve given so much.”
“We understand so clearly the need for this house,” says Cindy later in the day when quiet had returned. “You make lifelong friends here and you care so deeply for them. We never knew that Brian would get this sick and they would be serving me. The blessings we put out there are now coming back to us.”
“But what would have happened if the Middleton Lions had not taken up this house?” she asked. “What would Brian and I have done if Peter and Joann had not traveled and talked every place possible, and taught me with their example, the relentless serving of Lions? What would we have done?”
After nearly 10 months at Restoring Hope, Liz and Ben Leuenberger received clearance from their doctors to return home to LaCrosse, Wisconsin. Ben was the first simultaneous heart and liver transplant recipient in UW Hospital history.
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