CLARKS SUMMIT — Diane Scheuer of Newton Township has had much to be thankful for throughout her life, and she recently joined her church family in a grateful celebration of life itself.
The First Presbyterian Church of Clarks Summit commemorated National Donor Sabbath on Sunday, Nov. 17. The nationwide interfaith event is a time of thankfulness for those who make the decision to be organ donors, and a time to celebrate life for those who received a life-saving gift. Donor recipient, Megan Kane, who received a liver transplant at 6 months old, was a speaker for the event. The hymn “God, Each Day You Give Is Precious” was sung during the service.
A life-threatening diagnosis
Diane Scheuer was diagnosed with Primary Sclerosing Cholangitis (PSC), a slow-moving liver disease, in the 1990s when she was a teacher at Abington Heights. With no cure for the disease, she was told she would eventually need a liver transplant to survive.
Doctors determine the severity of PSC cases by a MELD (Model for End Stage Liver Disease) score. When Scheuer’s MELD score reached 12, she was put on a waiting list for a new liver at the University of Pennsylvania. By the fall of 2011, her condition had worsened.
Following her doctor’s recommendation, she traveled to the Carolinas Medical Center in Charlotte North Carolina with the goal of being listed there as well as at the University of Pennsylvania to increase her chances of getting a transplant. She arrived in early February 2012 with her husband, Jack Scheuer, expecting to be home in three days.
“The doctor said, ‘You’re not going home. You need to stay here,’” Jack Scheuer said. “He told us her condition was such that she needed to stay in the hospital.”
The Scheuers found an apartment they could lease on a short-term basis across the street from the hospital. Family – including their son, Brad, and daughter, Kristian – and friends took turns spending weeks in Charlotte.
“My ankles and legs were so swollen, I could not bend my knees or walk,” Diane Scheuer shared. “I was in a lot of pain. When your liver is bad, it effects everything else.”
The realization set in that it was a life and death situation.
“It was very scary,” she said. “The fluid started in my ankles and legs, but then it went to my abdomen. It was pressing against my lungs so that I couldn’t inhale. That was the scariest part. I struggled to breathe and expand my lungs. I think I said to them at that point, ‘It’s ok, you need to just let me go.’ Brad leaned down and got in my face and said ‘Mom, you are stronger than this. You can do this. You’re going to make it. You’ve come this far. Don’t give up now.’”
A procedure called paracentesis drained liters of fluid. Meanwhile, her kidneys were failing and she needed dialysis every two days.
The family received word at one point that there was a liver, but it went to someone else.
A life-saving gift
In March 2012, the Scheuers were told that there was another liver from a “young, healthy donor.”
They were unaware at the time that their donor was in the same hospital.
Brett Thomas Knierim, 23, was on life support following an accident. As Knierim’s family and friends gathered to say goodbye, the Scheuers waited for word if Diane would receive a liver. On Sunday, March 18, Diane Scheuer received Brett Knierim’s liver – a life-saving gift.
After the surgery, the doctor reported to the family that Diane’s liver had been in horrible condition, and without the surgery, she would have had only weeks to live.
She had a pressing need to share thanks to the family who made the decision that saved her life.
“I wrote a letter right away to my donor family,” she said. “When I didn’t hear back, I was told that it was expected, as it would be hard for a family to communicate in the middle of their loss. Even though I didn’t hear back, I kept writing. Every holiday I sent a card. I had to write, because I was so grateful for my life and couldn’t hold it in. I wrote to the mother of my donor for a year, and the procurement organization made sure it got to her. The summer after the first-year anniversary, I got a letter back.”
Brett Knierim’s mother, Michelle corresponded with Diane for months before the women decided to meet in 2014.
“Part of the reason I believe Michelle and I have a bond is because I, too had lost a child,” Diane Scheuer shared.
In 2010, the Scheuers lost their 27-year-old daughter, Ella Elizabeth.
“I could share that I did truly understand her pain,” Diane Scheuer said. “When they told me I received a young, healthy liver, I just assumed I was writing to a parent – a mother. I not only told her how much I appreciated this gift I had been given, but that I understood her grief.”
A connection was formed between the two women, and they continued to build a relationship – one more thing Diane Scheuer is grateful for.
Now recovered and doing well, she serves in several leadership and volunteer positions within First Presbyterian Church. She and her husband also volunteer with Gift of Life Donor Program, the largest organ procurement organization in the United States. They recently celebrated their 40th wedding anniversary.
“One of the reasons Diane got through this successfully and was able to endure, is that she had a marvelous attitude,” Jack Scheuer said. “She kept up her spirits and her faith. I believe it was instrumental in getting her through this.
“I was watching my wife die by the inch and deteriorate every day. I remember asking myself, ‘Are we going to get through this?’ And we did. ... Diane’s response to the life-saving gift she got is to give back as much as she can. She serves in every way she can and is the most thankful person I know. It’s who she is. Her life is a reflection of thanksgiving for the gift she received.”
Organ, eye and tissue donation FAQs
Who can be a donor?
People of all ages and medical histories should consider themselves potential donors. Your medical condition at the time of death will determine what organs and tissues can be donated.
Does my religion support organ, eye and tissue donation?
All major religions support donation as a final act of compassion and generosity.
Is there a cost to be an organ, eye and tissue donor?
There is no cost to the donor’s family or estate for donation. The donor family pays only for medical expenses before death and costs associated with funeral arrangements.
Does donation affect funeral plans?
An open casket funeral is possible for organ, eye and tissue donors. Through the entire donation process the body is treated with care and respect. Funeral arrangements can continue as planned following donation.
Does registering as a donor change my patient care?
Your life always comes first. Doctors work hard to save every patient’s life, but sometimes there is a complete and irreversible loss of brain function. The patient is declared clinically and legally dead. Only then is donation an option.
Does my social and/or financial status play any part in whether or not I will receive an organ if I ever need one?
No. A national system matches available organs from the donor with people on the waiting list based on blood type, body size, how sick they are, donor distance, tissue type and time on the list. Race, income, gender, celebrity and social status are never considered.
Why is it important for people of every community to donate?
Although donation and transplantation can take place successfully between individuals from different racial or ethnic groups, transplant success is often better when organs are matched between people of the same racial or ethnic background.
People of African American/Black, Asian/Pacific Islander, Hispanic/Latino, American Indian/Alaska Native and multiracial descent currently make up nearly 58% of individuals on the national organ transplant waiting list. These communities are in great need of more organ and tissue donors.