Jim and Mary Johnsrud, members of St. Gabriel the Archangel Catholic Church, pose at their home in McKinney on Sept. 22. Jim Johnsrud suffers from a rare liver disease but because of its degree is only eligible for a living organ donor transplant, but circumstances surrounding COVID-19 have made such matches more difficult than in years past. (David Woo/Special Contributor)
By David Sedeño
The Texas Catholic
McKINNEY — Throughout Jim and Mary Johnsrud’s home, not far from St. Gabriel the Archangel Catholic Church, there are constant reminders of what has always been at the center of their lives for the 39 years of their marriage.
Eight crosses hang on a wall near the entry. Current color photos of their two grown boys and their families take up wall space next to a black baby grand piano and black and white photos of distant relatives hang nearby. There are other antiques and religious icons throughout the two-story home, including a large rosary hanging on a wall, a rocking chair, and other century-old furniture inherited from their families.
These and other items and the stories behind them are treasures and reminders that faith and family will always get them through good times and bad.
Over the past several years and especially the past several months, the Johnsruds have had to rely greatly on God. To Mary Johnsrud, the health, job, and economic obstacles that they have faced seem no different than the biblical stories of drought, locusts, and famine, to name a few. But they know that whatever they have had to endure it’s God’s plan, not theirs.
There is much to their story, and for many people who would meet or see Jim Johnsrud for the first time they would see him as normal and healthy. For nearly 30 years, however, he has been battling primary biliary cholangitis, a rare autoimmune disease that attacks the bile ducts in the liver, causing cirrhosis or scarring.
He needs a liver transplant, from a living donor.
“What I know now learning from the doctors is that although I look pretty healthy and feel pretty darn good, this disease is real,” Jim Johnsrud said as he and his wife sat on a couch in their living room, holding hands as they began to tell their story. “My liver is very sick, and the doctors don’t know if I would survive another traumatic issue like what those last few episodes have caused me.”
Jim Johnsrud has endured several surgeries over the past several years—the disease has impacted other organs and continues to threaten other parts of his body.
And if having to worry about his health and prognosis were not enough, a few months ago, after four decades with JC Penney, he was laid off as the struggling company continued through its reorganization.
He has found another job with health care benefits that would cover a liver transplant, but his situation is such that he can only receive a living donor donation. Enter COVID-19 and several numerous negative scenarios. Elective surgeries, which is how this potential transplant would be considered, were barred in the early days of the pandemic. And even as those surgeries have resumed, there is a backlog. Unfortunately, because of the ongoing pandemic, it appears that the pool of people wanting to be tested for these types of living donations has also dwindled.
A transplant from a deceased person is not an option because his MELD score—Model for End Stage Liver Disease—is at 15 in a range that stretches from 6 to 40.
“That is where it is supposed to be right now, but that’s the nature of the disease,” he said. “If my MELD score is high, then I’m too sick to survive a transplant, so a living donor is the best option.”
‘I Do’
Jim and Mary Johnsrud met and dated while they both attended the University of South Dakota, and were married on Aug. 22, 1981, in Spearfish, South Dakota. Jim embarked on a career with JC Penney—Mary became a registered nurse—and they lived in different parts of the Midwest before settling in North Texas in 2002. They joined St. Gabriel the Archangel Catholic Church, and both are involved in various ministries at the parish.
Over the past few weeks, they have told Jim’s story over social media to spread the word about not only his disease but about the need for living organ donations to help others like him. Although one of the requirements for a donor is that they have to have a relationship with them—family or friend—it is not something that they bring up.
“I don’t ask anybody for a liver,” Jim Johnsrud said. “When someone inquires about my disease, I explain the situation and the need for a liver donor and make them aware who to contact and it’s been pretty amazing that there were people who would come back to me and say, ‘I called that number or checked that website’ but for various reasons they were not qualified.”
Those interested in finding out more about becoming a donor, please call the Liver Clinic at UT Southwestern Medical Center at 214-645-1919 or to a transplant coordinator at the Mayo Clinic Liver Transplant Program at 1-866-227-7501.
More information can be found at https://www.donatelifetexas.org/register-today/ or at https://www.mayoclinic.org/tests-procedures/living-donor-transplant/care-at-mayo-clinic/pcc-20384790
For the Johnsruds, the surgery and medical costs for the donor are covered 100 percent by the recipient’s health insurance.
Mary Johnsrud said the need for her husband is great, but asking for another person to donate part of an organ is something with which she had to get comfortable.
“You have to get to a place where one is not only willing to donate and give but the other one willing to receive,” she said. “Giving is not only about giving, but it also is about receiving.”
Trained as a nurse, but recently left unemployed because the facility where she worked made changes, Mary Johnsrud has been at the forefront of ensuring she asks all the right medical and healthcare questions for her husband. He relies on her for that and much more.
“Sometimes it just seems overwhelming,” Mary Johnsrud said, “but I just ask God, ‘Are you there? I know you are. I know you hear me even though I think I can’t hear you. Thank you for being with us when Jim has been near death, so help, please just help me to do what it is that you want me to do as Jim’s wife—standing beside him, taking care of him.’
“You can’t stop fighting,” she said. “You can do everything you can do and God will be there and will prop you up through another person, or something you read or something you hear or think you hear. It’s just enough to get you through that day and I’ve experienced that so many times. It’s not very fun, but that’s not what God’s plan is for us.
“I don’t know details of the plan, but I know that when I said, ‘I do’ and when things get dented up or broken, you either hobbled along with the dent or the break or we just did whatever we could to fix it.”
Faith Alive
Jim and Mary Johnsrud held hands as they talked about their journey, each looking at one another as the other spoke. Among the ministries that they are involved in is helping engaged couples prepare for marriage. They will talk to them about being in love, about happy times and challenges, children, finances, and, perhaps, to accept the unexpected as part of God’s plan.
“I never feel sorry for myself. Everybody’s got something,” Jim Johnsrud said. “I have faith. I follow doctor’s orders. I pray about it. My job is to take care of myself, eat healthy, stay active and build up my body to be strong enough to withstand surgery.”
And near the breakfast bar and seating area where they gather for a quick bite next to a 25-gallon antique stoneware crock, a banner hangs that is a testament to their faith in God. It comes from 1 Chronicles 16:34 and says to them that they are not alone.
“Give thanks to the Lord, for He is good. His love endures forever.”
