Ken Olander met his heart donor's family in January. The experience has helped Olander and the family heal.
Democratic Gov. Tony Evers’ state budget doesn’t propose any new strategies to fight chronic wasting disease despite years of demands from his own party for more action.
The budget checks off a long list of other Democratic priorities, including legalizing marijuana. But it doesn’t devote any additional funding or call for any new approaches for researching or slowing CWD. In fact, the budget doesn’t mention the disease even once.
“That makes me a little bit sad,” said Jeff Schinkten, president of Whitetails Unlimited, a national deer conservation group based in Sturgeon Bay. “We’re disappointed there’s no money in there. I don’t like closing a blind eye to it. We’re just ignoring it. It’s frustrating.”
CWD affects deer’s brains, causing them to grow thin, act abnormally and eventually die. It was discovered in Wisconsin in 2001 near Mount Horeb.
The state Department of Natural Resources reacted by calling on hunters to kill as many deer in the area as possible to slow the disease’s spread. Hunters and landowners refused to buy in, saying there’s no need to kill so many deer. The DNR took so much criticism that the agency ultimately dropped the plan.
Wary of angering deer hunters and losing their votes, former Gov. Scott Walker took a largely hands-off approach after he took office in 2011. The disease has since spread across the state. According to the DNR, 26 counties had at least one infected deer in the wild.
Democrats urged Walker to do more throughout his tenure. Walker did in early 2018 as he headed into the campaign season against Evers, adopting Democrats’ plan to force deer farms to upgrade fencing and ban hunters from moving deer carcasses out of CWD-affected counties, defined by the DNR as counties with an infection or counties within 10 miles of a county with an infection. According to the DNR, 56 of Wisconsin’s 72 counties qualify as affected. Republican lawmakers scrapped the carcass ban last fall, though, saying hunters were outraged at the restriction.
Evers didn’t stress outdoor issues and didn’t announce any CWD strategies during his campaign. Still, liberals had hoped he would attack CWD more aggressively than Walker.
“This season there’s reason for hope,” former Madison Mayor Dave Cieslewicz wrote in an article published in Isthmus, a Madison weekly newspaper, days into the November gun deer hunt. “With the election of Tony Evers, we can at least expect that our state will drop its current ‘see no evil’ policy and confront the problem ... The Evers election has made this year’s hunt just a little more joyous.”
But the budget does nothing with the disease. Evers’ spokeswoman, Melissa Baldauff, said in an email Friday that the administration is waiting for the DNR to come up with a CWD plan.
“Based on conversations with agency staff, there was not a need for the governor to put forward a specific budget request on CWD for this biennium because the DNR is continuing to work on its analysis of what can be done,” she said.
DNR officials had no immediate comment. Bill Bruins, a member of the DNR’s board and a Walker appointee, noted that the DNR is in the middle of a four-year study on deer mortality and Evers and the agency should wait until that’s complete before making any decisions.
“Is (CWD) a concern to the department and to everybody? Absolutely,” Bruins said. “(But) that has to translate into what’s doable and what can be done. That’s what the study is going to help us determine.”
Republican Tom Tiffany, chairman of the state Senate’s sporting heritage committee, said he’s not surprised Evers “punted” on the disease. The state has spent millions trying to fight it to no avail, he said. But he plans to ask new DNR Secretary Preston Cole during a confirmation hearing this week if the agency has a long-term plan.
“I could take a real partisan line here and say this is a failure of the Evers administration, but these are difficult decisions,” Tiffany said. “We’re just not sure yet what is going to be effective. But they’ve got to come forward with a plan. We need leadership from the Department of Natural Resources and ... the governor as well.”
Ashley Friis said she would never trade her daughter for her kidney, but she wishes somebody had warned her that pregnancy might rekindle her kidney disease.
She was thrilled when doctors told her she could get pregnant.
Her pregnancy would be high-risk, but doctors felt confident everything would be OK.
It wasn’t long before Friis was pregnant with a baby girl.
About six months later, Friis’ daughter Aidynn had to be delivered early because the baby had stopped growing in utero and Friis’ health was declining, she said.
Her pregnancy had triggered a recurrence of atypical hemolytic uremic syndrome—a rare disease that causes red blood cells to break down and kidneys to fail, said Ehteshamul Anjum, nephrologist and medical director at Mercyhealth Dialysis Center in Janesville.
Friis had been diagnosed with the disease about 10 years earlier, when it caused both her kidneys to fail. Two years after that diagnosis, Friis received a kidney transplant from her mother, she said.
Aidynn was born 1 pound, 9 ounces at 27 weeks in February 2017. Soon after, Friis was put on dialysis because her kidney had failed again.
The 31-year-old Janesville woman now needs another transplant and is looking for a living donor. She has been searching for nearly two years.
“More than anything, I just want to be home with my family and not miss out (on time) with my kids,” Friis said.
Friis is one of 1,553 people on waiting lists for kidneys in Wisconsin, according to the Organ Procurement and Transplantation Network.
Friis continues to do everything a young mom needs to do: work, pick up her step-daughter from school, play with her toddler, bake birthday treats for her fiance.
But she does it while being constantly fatigued from treatment, spending about nine hours a week in dialysis and attending bi-weekly blood infusions in Madison.
“I feel like it can be really isolating sometimes,” Friis said. “If I had a nickel for every time I said, ‘Sorry, I can’t. I have dialysis...’ I just feel like I miss out a lot on life. It’s just not fair, basically.”
In 2009, doctors put Friis into a medically induced coma for four days while they worked to lower her blood pressure.
Her kidneys were failing, and she was diagnosed with aHUS, Friis said.
AHUS is rare, and little is known about it. Researches think the gene mutation that causes the disease might be genetic, but research is limited with few reported cases, Anjum said.
Anjum said he has treated one other woman in Janesville for the disease. That woman is still in intensive therapy but soon will be taken off dialysis and is expected to do well.
Having two women diagnosed with the disease in Janesville is “very surprising,” Anjum said.
There was no treatment for the disease when Friis was diagnosed, she said.
After two years of dialysis and plasmapheresis treatment to clean her blood and plasma, Friis was cleared of aHUS.
Once the disease was gone, it would be gone for good, doctors told Friis.
That information, she now knows, was wrong.
Doctors didn’t know in 2009 the disease could come back, but seven years later, when Friis was considering getting pregnant, doctors knew more.
“They expected nothing but the best for this (pregnancy). But someone along the line should have said, ‘Hey, you know your (a)HUS can come back with stressors like pregnancy,’” Friis said.
Medication early on could have prevented the kidney failure, Friis said.
“I would never trade her (Aidynn) for my kidney. I would never rather have my kidney than her, but that knowledge beforehand would have been useful,” Friis said.
Friis is on the deceased donor list at UW Health System, but a living donor is preferred, she said.
A living donor provides better chances of survival because the organ is less likely to be injured before or during transplant, Anjum said.
Anjum has seen a number of patients need a second transplant on the same organ. Getting a transplant is always better than living life on dialysis, he said.
Friis has posted on social media looking for someone willing to be a donor.
Through social media, Friis met Anne Reece, a Beloit woman who donated a kidney to her mother in 2000. Reece’s donation gave her mother 11 extra years of life, inspiring Reece to be an advocate for organ donation, Reece said.
When someone is interested in being a live donor, they first have to go through a series of tests to determine whether they are a match for that person, Reece said.
The process takes time. Reece and her husband, Brian, have made themselves available to talk to anyone with questions about being a living donor, she said.
An anonymous donor reached out to the UW Transplant Team at the end of 2018 as a potential donor for Friis but was ruled out in January for medical reasons, Friis said.
“It was still really hard to hear that they officially ruled that person out, but I was trying not to get my hopes up,” Friis said.
Doctors won’t let Friis get another donation from a family member because of a suspected genetic link with the disease, she said.
The genetic link also means there is a chance Aidynn will have aHUS, Friis said.
The process for choosing who gets organs from deceased donors is complicated, Anjum said.
Factors for kidney allocation include wait time, donor/recipient compatibility, age, location, blood type and other factors, according to the Organ Procurement and Transplantation Network.
Transplant candidates are screened through a computer application to determine the best match for an organ once made available, according to the network.
There are 897 people waiting for kidney transplants through the UW Health System, according to Organ Procurement and Transplantation Network data.
Of the 1,553 people waiting for kidneys in the state, 250 of them have been on wait lists for five or more years, according to the data.
Friis has been on a wait list for about two years along with 357 other people in the state, according to the data.
Being on the deceased donor wait list can feel agonizing, which is why Friis hopes a living donor will step up to help her, she said.
Aidynn turned 2 years old in February. She has a strong personality and, at this point, no major health concerns, Friis said.
The exhaustion from treatment makes it difficult to keep up with a buzzing toddler, Friis said.
“It is really hard to be as active as I want to be when I can barely get myself off the couch,” Friis said.
Living with aHUS leaves Friis with little control over her life.
Friis has to work part-time at her job as a paraprofessional at Adams Elementary School because working too many hours would disqualify her from insurance coverage that help pay for her expensive aHUS treatment.
Hours spent at dialysis take away from time Friis could spend with her children, which has been the most difficult thing for her, she said.
“I would never say we wouldn’t have had her (Aidynn) or would have done things differently,” Friis said, “but we could have been more proactive in being prepared.”
Ken Olander met his heart donor's family in January. The experience has helped Olander and the family heal.
Brad A. Dodge
Robert L. Parr
Helen “Tootie” Wilson
Ken Olander wanted Sheila Larson to hear her son’s heart beat again.
Luckily, the Janesville man’s winter vacation home is 15 minutes from the mother of Olander’s heart donor, he said.
Olander met Larson and other members of Spencer Briscoe’s family Jan. 16 in Surprise, Arizona.
Briscoe was 24 years old when he died in a car crash in Rapid City, South Dakota, on Nov. 12, 2017.
Two days later, a 4:38 a.m. phone call woke Olander with life-changing news. There was a heart ready for him at UW Hospital in Madison, the caller told him.
Olander and his wife, Linda, reached the hospital at about 6 a.m. Within 24 hours, Olander had a new heart, one that previously belonged to the young South Dakota man, he said.
Olander’s heart problems began in 1985 when he was diagnosed with cardiomyopathy. Doctors told him he might need a heart transplant, but his heart endured for more than 30 years before his condition worsened, he told The Gazette in 2017.
Organ recipients are given the option to write letters anonymously to their donor’s families through Lifesource—an organization that oversees organ, eye and tissue donations, Larson said.
Briscoe’s heart will give Olander 10 to 20 more years of life, and Olander wanted to thank Briscoe’s family, he said. He sent his first letter to Larson in January 2018.
All of Briscoe’s organs except his heart went to patients in Minnesota, Larson said. Olander was the only recipient who has reached out to Larson so far.
After exchanging letters anonymously, by recommendation of Lifesource, Olander and Larson exchanged further information and arranged to meet, they said.
“It has been a huge part of my healing visiting with them (Olander and his wife) and knowing how appreciative they are,” Larson said. “To see how well Ken is doing is incredible. He went out dancing with his wife. A year ago, he could hardly walk to the mailbox. That has been huge.”
Olander has six grandchildren and a great grandchild that he is thankful to have time with now, he said.
“I am just blessed to have his kindness and generosity to have a heart that works well,” Olander said.
Larson was preparing to attend a grief counseling group when she received Olander’s first letter.
The loss of her son still weighs heavily on Larson’s heart, but meeting Olander showed her how a horrible situation could produce something positive, she said. She urges other recipients to write to their donors’ families because it could change their lives.
“I tell Ken he got the best part of Spencer,” Larson said. “He had the biggest heart of anyone.”
Hundreds of workers at four General Motors plants slated to close this year are facing a painful choice: Take the company’s offer to work at another factory—possibly hundreds of miles away—even if that means leaving behind their families, their homes and everything they’ve built. Or stay and risk losing their high-paying jobs.
The automaker says nearly all of its blue-collar U.S. workers with jobs in jeopardy have work waiting for them. Many from the targeted factories in Michigan, Ohio and Maryland already have voluntarily transferred to plants in the Midwest and South, not wanting to take a chance.
Others are still agonizing over the decision, unsure whether to sell their homes or hang on to hopes that their plants might reopen.
The automaker says the changes announced in November are needed to cut costs and put money into new vehicles. The plant closings still must be negotiated with the union, giving workers a sliver of hope.
Anthony Sarigianopoulos has put in 25 years at GM’s plant in Lordstown, Ohio, where the last Chevrolet Cruze will roll off the assembly line sometime later this month.
He has two sons in elementary school and an ex-wife he gets along with, and his parents are just down the street in the Youngstown suburb where he grew up.
Sarigianopoulos, who checks and fixes cars at the end of the line, knows he is fortunate to have a shot at a job even if it’s somewhere else—unlike most of the 8,000 white-collar employees GM is laying off and those who are losing jobs at the automaker’s nearby parts suppliers.
But he also doesn’t want to move and miss out on ballgames and school concerts, knowing that his boys will be almost out of high school by the time he retires.
Volunteering to leave now for another plant would also mean he couldn’t come back if Lordstown reopened. But if he is forced to transfer once the plant closes, the option to return would still be open under his union contract.
“That’s part of the chess match,” he said.
So Sarigianopoulos, 48, filled a notebook with charts and graphs outlining the pros and cons of transferring. What he has decided for now—unless he’s forced to transfer—is to stay and hope the plant will get a new vehicle to build.
Andrea Repasky didn’t have much of a choice. Even if it meant saying goodbye to her elderly parents, a niece she loves dearly, her favorite pizza place and her mom’s wedding soup.
She had to keep her job because she is a breast cancer survivor and runs the risk of the disease coming back.
“I couldn’t afford to let my health benefits run out,” she said.
So the 42-year-old team leader at the plant volunteered to leave the Youngstown area for a new job in Indiana, allowing her to stay closer to home instead of being shipped to a plant in Tennessee or Texas.
“That was my goal, to be a car ride away if something, God forbid, happened to my family,” she said.
Repasky has been working for just over a month at GM’s truck plant in Fort Wayne, Indiana, where she shares an apartment with a friend who also transferred there.
While she desperately misses her family and everything about her hometown, she said her decision was easier because she isn’t married and has no children. Some co-workers moved without their children so that the youngsters could stay behind and finish the school year.
“I cry when I think about it,” Repasky said. “How do they explain to their kids that Mommy or Daddy is leaving and they’ll see you on the weekends?”
Tiffany Davis feels the stress of it all both at home and at the lone elementary school in Lordstown where she teaches fifth grade.
The students know they will be saying goodbye to some of their classmates in a few months. That includes three out of the 18 in her class.
“They aren’t the spunky, lighthearted crew they were at the beginning of the year,” said Davis, 35.
She and her husband, who has worked on the GM assembly line 17 years, talk almost every night about what to do next.
“It has taken over our lives, but how couldn’t it?” Davis said.
“It’s draining, it’s exhausting. No matter what decision we make, we’re worried it will be the wrong thing.”
The couple decided not to take a transfer for now. But they are selling their house and moving with their two children into her mother-in-law’s attic so they won’t be paying for two homes if they are forced to go. They also canceled a summer vacation and cut out cable TV and pizza nights on Friday.
“We’re uprooting our entire lives right now because we don’t have any answers,” she said. “We know that no matter what happens we will have to follow GM.”
Nearly two decades after founding the New Beginnings Outreach Ministries in Youngstown, Ohio, Melvin Trent stood before about 150 members of his church in early February and told them he was leaving.
His wife, an engineer with GM, was being sent to its SUV plant in Arlington, Texas.
“You could hear people crying throughout the congregation. One person said, ‘It feels like when my mother died,’” he said. “For some, I’ve been the only pastor they’ve known.”
His wife already has moved, and he will join her after their son graduates from high school in May.
“We’ve never been apart like this,” he said.
Trent, 55, who retired after 35 years with the automaker, said it was a “no-brainer” to accept the relocation but not an easy decision.
“The first thing I did was go to the church, and I cried like a baby because I was leaving something I birthed and something I loved,” he said. “But it was the right decision for our family.”
He added: “I’m leaving not my natural family but my church family.”