When the gift of life is quite literal
Donate a liver or kidney to save one
By Ann Efimetz | THE VIRGINIA GAZETTE
Darrell Herlinger was born prematurely and was hospitalized for several months. His care included multiple blood transfusions.
Four decades later, doctors believe those transfusions gave him Hepatitis C, a virus which leads to swelling of the liver. In severe cases such as his, the virus results in cirrhosis.
His liver is failing.
Herlinger, now 38 and the Gazette’s director of circulation, has joined more than 100,000 people nationally, as well as several hundred in Virginia, on a waiting list for a vital organ. He needs a replacement liver, or a section of one, to save his life.
The United Network for Organ Sharing is a nonprofit that manages the nation’s organ transplant system under contract with the government, matching donors to recipients.
Most transplants come from the deceased, but kidneys and the liver can come from living donors. Family members, friends or colleagues willing to undergo surgery can save a life.
Herlinger’s wife, brother and sister have already been screened, but none proved viable. He is the father of two children, but they are too young to donate.
So he waits.
“It can be one to three years to get a cadaver donor,” Herlinger said in an interview. “Right now the best option for me is a living donor.”
That involves replacing the failing liver with a portion of a healthy liver. It’s the only regenerating organ in the body. After surgery, both livers will regenerate to normal size and function within a month.
The procedure was adopted in the United States in 1997 after success in Europe. A year later, Virginia Commonwealth University Medical Center in Richmond performed the second adult-to-adult living donor liver transplant in the country. There have been about 130 at VCU since.
“It is a process a lot of people don’t know about,” said April Ashworth, liver transplant coordinator at VCU Medical Center. “But to help someone is a real and amazing gift if you think about it.”
People may mistakingly think the transplant involves only donating some liver tissue. That’s not the case.
“It is not tissue,” she stressed. “The recipient either receives a partial liver, the right lobe of a donor, or they get a whole liver from a deceased donor. But it is all liver, not a small piece of tissue. It is half the liver.”
That differs from a kidney donation, since people can get along with just one.
A comprehensive booklet explains the pre-op tests, surgery, possible complications and recovery period. A liver donor undergoes a battery of tests. Those aged 18-55 with compatible blood type need to be roughly the same height and weight as the patient. Extensive screening rules out underlying health problems and determines compatibility.
Former Gazette senior reporter Bill Tolbert is now a night editor at the Free-Lance Star in Fredericksburg. He also suffers from end stage renal failure and does dialysis nightly. He is on waiting lists for a new kidney at two hospitals. Last month he wrote about the anticipation and anxiety of his wait for a transplant.
“I’ve been on the waiting lists for about a year,” Tolbert wrote. “I have read and been told that someone with my blood type — O-positive – waits an average of five years or more before getting a transplant.”
A transplant is his best option, though he quickly points out it is not a cure. His body could reject the kidney, or high blood pressure or some other condition could damage the new organ. A few weeks ago, Johns Hopkins called to say there was a possible match.
“I won’t have to do dialysis every night,” Tolbert wrote with hope, noting the myriad preparations he and his wife had to make. “No more monthly lab work with what sometimes seems like endless tubes being filled with my blood.”
There was also the reality of the high-risk surgery.
“More than once, I lost it,” he wrote. “I went to my home office, sat down at my laptop and began to type notes to my wife and each of my two daughters. What do you say to someone if it's the last thing you will ever say to her?”
When he finished the notes, Tolbert told his wife where he’d left them, with instructions to open them only if the worst happened.
A second call came from Johns Hopkins. Tolbert wouldn’t get the kidney. No explanation was offered.
“So we wait for the next phone call,” he addee. “It could come in weeks, months or years. We’ll use this experience to plan better for the next time. We’ll have bags packed and emergency plans made for the dog. Maybe the next time, they’ll tell me to come to the hospital and I’ll get that new kidney. Or maybe they’ll call back again to tell me it’s not my day.
The kidney Tolbert came so close to getting came from a man who died from head trauma. That’s the most frequent source of donation, which people typically note on their driver’s license. You can also instruct loved ones about your wishes, or sign up atwww.donatelifevirginia.org.
Five years ago Rhonda Noska acted on the idea of becoming a living donor. A woman from her church, just 28 years old at the time and the mother of two elementary-age children, was taking dialysis three times a week.
"I'd see her on Sunday morning and she'd be very chipper," Noska recalled. "By Wednesday she'd be so worn down she looked half dead."
Noska thought about donating. Then prayed about it.
"I knew then it was the right thing to do," she said.
Within three months of going in for testing, surgery was performed. Noska said she felt fine after 3-4 weeks, but waited 6-8 weeks to go back to work.
"Nothing changed," she said of her lifestyle and her diet. "At the hospital I asked what I would need to change. They simply said to try and avoid things that might damage my remaining kidney -- skydiving, for instance. But I've been white-water rafting a few times since, rock-climbing too. I guess I didn't listen."
Noska said in the months following the transplant she felt something of a euphoria, the knowledge that what she'd done had made another person's life better.
"Would I do it again? I can't, for obvious reasons. But if I could, I would."
“It is one of those things that people don’t think they will have to worry about,” said Doug Wilson, executive vice president of LifeNet Health, a nonprofit organ procurement organization. “They never think they may become so gravely ill they may need an organ transplant.”
He added. “It is a matter of life and death. Every week in the United States, too many people die simply because there isn’t an organ available. We are not missing the surgeons to perform the surgeries. Nor are we missing the medications. We are simply missing the organs needed.”
The issue is highly emotional.
“We see both sides of the equation here,” Wilson said. “We see tragedy every day, because that is what starts the process. We see organs and tissues going to every state in the country. You have a family who has suddenly lost a loved one, and are donating the organ in support of their family member’s wishes for transplant. Down the road, the families may take solace that the organs are helping someone else survive. It can provide consolation for them, but not immediately.”
Organ donation can have a ripple effect on families, loved ones, friends, colleagues and co-workers. “It touches so many people,” Wilson said. For Darrell Herlinger, the wait is day-to-day.