As a child growing up in Park Rapids, Thomas James "T.J." Hedeen loved team sports. Now, at age 35, he needs others' help to score again.
T.J. needs a liver transplant - soon.
Possibly his best chance to beat his illness would be to find an eligible live donor.
His parents, Carter and Florence Hedeen of Park Rapids, are trying to help doctors find one.
This week, Florence explained T.J. has no living relatives known to him. Hedeens adopted him through the Minnesota Adoption Exchange when he was 6, knowing he was born with Alpha1-antitrypsin, a rare hereditary disease.
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"It means he was born with cirrhosis of the liver," Florence said. Fortunately, T.J. was born at St. Mary's Hospital in Rochester and the disease was diagnosed right away. The doctors at Mayo followed him for two years and things were going well so he continued to live a physically normal life.
At birth, T.J. was placed in foster care with a family in Chatfield. When the Hedeens were ready to adopt, T.J. was the third child they learned about. They brought him home and adopted him six months after he arrived.
"It was a medical adoption," Florence explained. At the time, Carter was a physician at Dakota Clinic. "He was adopted for his special needs."
T.J. played all sports while he was in school. Florence says hockey was "his greatest love" and he was thrilled when he was named Athlete of the Week.
After graduating from high school in 1990, he went to Itasca Community College and managed the hockey team, then transferred to the University of Minnesota at Crookston and managed the hockey team there also.
He earned an Associate in Arts degree in small business management and sales.
Florence said he worked, too. "Since T.J. was able to hold a job, he has wanted to work." One summer he loaded turkeys. For three years, he managed the golf course at Brookside Resort. He worked in food service locally, too.
"He always had two jobs or one but worked more than full time," she said.
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Married in April
For the past six years, T.J. has been a truck driver and in April, he got married. He and his wife, Mickey, have two children.
But, according to Florence, he has had some medical issues that have come back to haunt him.
She explained he had shoulder surgery that had to be redone and hernia surgery, both work-related. He also got pneumonia. "He was cured of the pneumonia, but not of the effects," she explained. The surgeries impacted T.J., too, she said. "Each one stressed his liver."
She also believes he had symptoms of liver disease, such as backaches, for a long time but ascribed them to something else. "Cirrhosis of the liver has such negative connotations," she explains. T.J. didn't want to talk about it even with doctors.
Carter and Florence were in Australia visiting friends when T.J.'s recent illness came on.
He had gotten a new job driving truck, was making a delivery in Iowa and called Mickey because he was in so much pain. He was taken to the University of Iowa Hospital in Iowa City where doctors were convinced he needed gall bladder surgery.
Fortunately, Florence said, Mickey suspected otherwise and had T.J. airlifted to Rochester. "If they had done gall bladder surgery, he would have died," Florence said.
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T.J.'s brother, Eric, drove to Rochester right away. It took Carter and Florence three days to get home from Australia. When they arrived Nov. 23, T.J. was on the liver transplant floor at Rochester Methodist Hospital. Three days later, he was formally notified, he should start seeking a donor.
Since then, T.J. has been back and forth between their home in Farmington and the hospital. This week, Carter stayed with him for appointments with the liver transplant team.
He was well-covered by medical insurance while he was driving truck, Florence said, but now he can't work and he and his wife's medical insurance premiums through her work are $460 a month.
"It is difficult," Florence said. He only gave his parents permission to help in seeking a donor this week.
Education on transplants
Hedeens completed training in liver transplants. Florence said she wasn't aware of the living donor option until then. Often a family member can provide a match, but even though all the Hedeen family members are willing, they are either not eligible or don't have a matching blood type.
A segment of a healthy person's liver can be transplanted into the person who is sick, she explains. The liver is unique because it can regenerate itself to normal size in both the donor and the recipient within weeks.
Michael Lombard, son of John and Paulette Lombard, received a living donor transplant from a cousin in June 2005. He was 29 years old and had been waiting 11 years for a donor.
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Donors must be in good health, 21-55 years of age and have a compatible blood type. T.J. is O+.
If a live donor comes forward for T.J., he will not have to wait for his turn for a cadaver liver, Florence said. Those odds are not ones she likes to talk about. There are 100,000 patients waiting for organs in the United States; 17,000 of them need livers and, in a typical year, only 4,500 are available from cadaver donors.
Even though T.J.has been moved very high on the list of potential recipients, a living donor would be better, Florence said.
"It's a long shot, but there's a perfect match out there."
For more information, about the Live Donor program at Mayo, call 866-227-7501.
For more information on organ donation, contact Life Source at 888-536-6283 or go to www.organdonation.org or United Network for Organ Sharing at 888-894-6361 or at www.transplantliving.org .
For updates on T.J., go to www.CarePages.com where there will be updates at giftoflifefortj.
