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Columbia man on the go one month after liver transplant
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By Natalie Fieleke
nfieleke@newstribune.com
Just two weeks ago, doctors removed the painful staples from Bill Roberts' abdomen. Now, the quietly determined Columbia man says he's tired of being cooped up in the house.
In fact, despite the pain of the operation that gave him a new liver on March 13, Roberts was pretty much ready to get up and go as soon as he emerged from anesthesia at Barnes Jewish Hospital's intensive care unit.
“In the hospital, doctors were worried because he was pushing himself so hard,” said Roberts' wife, Mary, who noticed the physical therapist chiding her husband to slow down during his first walk after the surgery. “He was ready to go get better.”
April is National Donate Life Month, and while Roberts is recovering at home from his liver transplant, 3,000 Missourians and Kansans are included in the 91,000 people nationwide who remain on waiting lists to receive an organ transplant, according to data from the United Network of Organ Sharing.
In 1985, Bill was diagnosed with Crohn's disease, an inflammatory bowel disease. Doctors also suspected he had a liver problem that affects one in 25 Crohn's patients. Seventeen years of medication helped keep his Crohn's under control, but also might have done a number on his liver.
Thinking back, the Roberts can see the indications that Bill's liver wasn't working as it should, such as tests revealing high liver enzyme levels, his almost constant fatigue and his retention of excess fluids. He was jaundiced, had a bloated abdomen and sunken eyes and Mary remembers her husband looked “like a skeleton” because his body wasn't metabolizing nutrients correctly.
The couple's visit to Barnes Jewish Hospital in St. Louis in December 2005 confirmed that his liver was failing, so doctors scheduled Bill for a Feb. 7 evaluation to determine his fitness for a transplant. But while they traveled to attend a conference in San Antonio for Mary's job as St. Mary's Health Center telecommunications supervisor, Bill “bottomed out overnight.”
After he was stabilized, an air ambulance, a private jet retrofitted to transport critically ill passengers, flew him back to Barnes for an evaluation where a team of specialists determined him to be a good candidate for a transplant.
Bill almost didn't believe it when he received a call from the hospital at 3:15 a.m. on March 13, less than a month after he'd been officially placed on the registry.
Recipients awaiting a liver transplant wait an average of 11 months, indicating that Bill's condition must have been deteriorating quickly, said Ray Gabel, community education coordinator with Midwest Transplant Network, a not-for-profit organ bank serving Missouri and Kansas.
“If the decision is between two candidates on the list, one who has two months to live and another who has 24 hours, it's the sickest first,” Gabel said.
Everything happened so quickly for the Roberts that they weren't sure it was really happening.
“After we were done (on the phone) I had to look at the caller ID to see if I'd dreamed it,” he said.
The couple quickly realized the reality of their situation, stopping to cry at the fact that Bill had to be at the hospital within six hours because someone else had a loved one who had recently died.
“We'll never know who that person was, but we're so thankful they were thoughtful enough to give this wonderful gift to my husband,” Mary said. “They can't possibly know what this really means to some families.”
Gabel, who is himself the recipient of a heart transplant, called the donor families the heroes in the process.
When one family decides to donate their loved ones organs they can save or enhance up to 50 lives through all the tissues and organs that can be harvested from one person, he said.
Despite all the people who benefit from one organ donor, data show there are also 17 people who die each day because they didn't get the transplant they needed in time, he said.
Virginia Beatty, coordinator for the Missouri Organ Donor Program, helps maintain a registry of more than two million people who've signed up to donate their organs and tissue after their death.
In Missouri, individuals can carry a donor card, check the box on the back of their driver's license that allows them to specify they'd like to be an organ donor or sign up with the state's organ donor registry. But ultimately, the legal next of kin is the one who provides final consent at the time of death.
If someone is interested in organ donation, both Beatty and Gabel stressed the importance of talking to family, friends, religious leaders and doctors to make sure their intent is known and their wishes are carried out.
“Our biggest detriment is that 91 percent of the public has heard of it (organ donation) or is in favor of it, but it drops to 38 percent of people who've done anything about it,” Gabel said. “You've gotta let your family know your wishes, because you won't be able to speak for yourself.”
The Roberts are able to write a letter that an organ donation coordinator confidentially give to the family who chose to donate their loved one's organs, but their experience is so fresh, they're still processing how to express their thanks for the choice that enabled them to extend their 31-year marriage.
Bill says he hopes to get a doctor's approval to return to his job as an ATM and computer systems repair person in the near future. But for a few more weeks, he'll have to settle for walking around the couple's country property, to and from the mail box, out to the horse pasture, longing to get the terraced garden in back of the house back in good shape.
“I think I need to get up and out of here,” he said. “My main objective was to get stronger and that's happened fairly quickly.”
In fact, despite the pain of the operation that gave him a new liver on March 13, Roberts was pretty much ready to get up and go as soon as he emerged from anesthesia at Barnes Jewish Hospital's intensive care unit.
“In the hospital, doctors were worried because he was pushing himself so hard,” said Roberts' wife, Mary, who noticed the physical therapist chiding her husband to slow down during his first walk after the surgery. “He was ready to go get better.”
April is National Donate Life Month, and while Roberts is recovering at home from his liver transplant, 3,000 Missourians and Kansans are included in the 91,000 people nationwide who remain on waiting lists to receive an organ transplant, according to data from the United Network of Organ Sharing.
In 1985, Bill was diagnosed with Crohn's disease, an inflammatory bowel disease. Doctors also suspected he had a liver problem that affects one in 25 Crohn's patients. Seventeen years of medication helped keep his Crohn's under control, but also might have done a number on his liver.
Thinking back, the Roberts can see the indications that Bill's liver wasn't working as it should, such as tests revealing high liver enzyme levels, his almost constant fatigue and his retention of excess fluids. He was jaundiced, had a bloated abdomen and sunken eyes and Mary remembers her husband looked “like a skeleton” because his body wasn't metabolizing nutrients correctly.
The couple's visit to Barnes Jewish Hospital in St. Louis in December 2005 confirmed that his liver was failing, so doctors scheduled Bill for a Feb. 7 evaluation to determine his fitness for a transplant. But while they traveled to attend a conference in San Antonio for Mary's job as St. Mary's Health Center telecommunications supervisor, Bill “bottomed out overnight.”
After he was stabilized, an air ambulance, a private jet retrofitted to transport critically ill passengers, flew him back to Barnes for an evaluation where a team of specialists determined him to be a good candidate for a transplant.
Bill almost didn't believe it when he received a call from the hospital at 3:15 a.m. on March 13, less than a month after he'd been officially placed on the registry.
Recipients awaiting a liver transplant wait an average of 11 months, indicating that Bill's condition must have been deteriorating quickly, said Ray Gabel, community education coordinator with Midwest Transplant Network, a not-for-profit organ bank serving Missouri and Kansas.
“If the decision is between two candidates on the list, one who has two months to live and another who has 24 hours, it's the sickest first,” Gabel said.
Everything happened so quickly for the Roberts that they weren't sure it was really happening.
“After we were done (on the phone) I had to look at the caller ID to see if I'd dreamed it,” he said.
The couple quickly realized the reality of their situation, stopping to cry at the fact that Bill had to be at the hospital within six hours because someone else had a loved one who had recently died.
“We'll never know who that person was, but we're so thankful they were thoughtful enough to give this wonderful gift to my husband,” Mary said. “They can't possibly know what this really means to some families.”
Gabel, who is himself the recipient of a heart transplant, called the donor families the heroes in the process.
When one family decides to donate their loved ones organs they can save or enhance up to 50 lives through all the tissues and organs that can be harvested from one person, he said.
Despite all the people who benefit from one organ donor, data show there are also 17 people who die each day because they didn't get the transplant they needed in time, he said.
Virginia Beatty, coordinator for the Missouri Organ Donor Program, helps maintain a registry of more than two million people who've signed up to donate their organs and tissue after their death.
In Missouri, individuals can carry a donor card, check the box on the back of their driver's license that allows them to specify they'd like to be an organ donor or sign up with the state's organ donor registry. But ultimately, the legal next of kin is the one who provides final consent at the time of death.
If someone is interested in organ donation, both Beatty and Gabel stressed the importance of talking to family, friends, religious leaders and doctors to make sure their intent is known and their wishes are carried out.
“Our biggest detriment is that 91 percent of the public has heard of it (organ donation) or is in favor of it, but it drops to 38 percent of people who've done anything about it,” Gabel said. “You've gotta let your family know your wishes, because you won't be able to speak for yourself.”
The Roberts are able to write a letter that an organ donation coordinator confidentially give to the family who chose to donate their loved one's organs, but their experience is so fresh, they're still processing how to express their thanks for the choice that enabled them to extend their 31-year marriage.
Bill says he hopes to get a doctor's approval to return to his job as an ATM and computer systems repair person in the near future. But for a few more weeks, he'll have to settle for walking around the couple's country property, to and from the mail box, out to the horse pasture, longing to get the terraced garden in back of the house back in good shape.
“I think I need to get up and out of here,” he said. “My main objective was to get stronger and that's happened fairly quickly.”
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