It’s been 50 years since the first successful human liver transplant was performed. Since then more than 149,000 people have received donated replacements for the second largest organ in their bodies. But some 1,500 patients die every year waiting for an available liver.
SDPB’s Jim Kent spoke with a Hot Springs resident who recently celebrated her 5-year liver transplant anniversary and notes that it would never have been possible without a donor.
It’s a long and winding road to Paula Edwards’ house in the Southern Black Hills. But she’s happy to be here. In fact, she’s happy to be anywhere…considering what life held in store for her just a few years ago.
“Two thousand and eleven Mike came into the bedroom one morning and I was laying there just looking at the ceiling,” Paula recalls. “And I was not responsive…I was just starting. So he took me up to Rapid City…and I was in a coma for a week.”
That was the start of the most demanding journey Paula and her husband Mike would travel together on her road to a new liver…and a new life. But it really all began in Paula’s childhood.
“When I was 12 years old I went in for some simple surgery which got…I think…a little weird in the surgery so they gave me blood transfusions,” Paula explains. “From that transfusion I received Hepatitis C.”
Paula didn’t know she’d been infected with Hepatitis until many years later as part of a health screening for life insurance.
“They tested me and the liver specialist said ‘You have Hep C.’ says Paula. “And I said ‘Okay. Great. Virus, right? You just give me some drugs and I’ll be all right.’ And he said ‘No…it’s a virus like it makes you sick and then it kills you.”
Paula took interferon shots for 6 months…a regimen she describes as giving mild flu symptoms and making her hair fall out. Her hepatitis was still present at the end of that treatment. But with no other medical options Paula moved on with her life noticing little impact from the disease other than being frequently tired. 20/101
“It’s something that you live with,” observes Paula. “So you don’t think much about it ‘cause it’s your normal state.” 5/106
Seven years later Paula was offered another new treatment as her liver was showing signs of infection. This regimen was interferon mixed with ribavirin. Another 6 months of shots with no positive results and side effects that were worse. That’s when Paula decided to back off any medical help until a definite cure for her was found. But there was a caveat.
“You know…you’ve always got that hanging over your head,” Paula comments. “That someday your liver’s just gonna’ start…failing. Because they call it a…silent disease. You don’t know it’s in there but it’s destroying your liver. And you’re getting cirrhosis. So…” 14/143
It took a few years but Paula eventually found herself in a coma at a Rapid City hospital. A coma that 80 percent of patients don’t survive. Paula’s condition had deteriorated much quicker than most liver patients and her infection was so severe she was flown to Sioux Falls as soon as she regained consciousness. Paula’s MELD number - the Model for End-Stage Liver Disease scoring system for assessing her health - was also off the chart. Paula’s MELD score was 42 on a scale that stops at 40. She says her next step and chance for life was a liver transplant. 39/182
“I never felt like I was going to die,” remembers Paula. “I don’t know why. I just knew that I wasn’t going to die. But if you read the records and all the charts and all the criteria…I was right at death’s door.”
Because of that Paula was number two on the liver transplant waiting list. Her stop in Sioux Falls was only temporary before taking another plane ride – this one to Milwaukee…where the surgery would be performed. Paula remembers the moment her doctor whispered in her ear that a liver had been found.
“I don’t think I was scared,” comments Paula. “I was just thinking to myself ‘This is gonna’ be a lot of pain” I think is probably what I was thinking the most of. This’ll be a lot of pain. And then…I started thinking about ‘Okay…right now there’s somebody who’s mourning their loved one. And…you know…I’m gonna’ get their liver but they’re having a whole different experience. I was just always very cognizant of that. You know…that I was gonna’ live but somebody was gonna’ die.”
Reactions to medications along with a seizure prolonged Paula’s stay in Milwaukee for 3 and a half months.
Five years after that fateful day when a young man’s death gave life to a middle-aged woman from the Black Hills…his memory is still a part of her. His name was Nick.
PE: “He was 17 years old,” explains Paula. “Won state titles in weightlifting. Of course…I make sure to always give Nick he credit that I feel good…and I’m healthy because of him. Spiritually…I don’t go to church or anything like that but the world is so miraculous to me now. And some days I wake up and I think…’I have someone’s liver I my stomach.’ And if you let your mind go to how miraculous that is…it’s just…sometimes…I can’t find words.”
Since recovering from her surgery Paula Edwards has appeared in a commercial about her liver transplant and has mentored Texas students who are researching organ transplants. She’s become a staunch advocate for organ donation and continually reminds people that they each have the opportunity to save someone’s life with their driver’s license. All they need to do is “check the box”.
Related links:
National Organ Donation Registry
https://www.organdonor.gov/register.html?gclid=COeEv5e1_NICFUm5wAodeAoMGA
A Walk Together: Our Journey Through Liver Transplant
By Paula Edwards, Michael Edwards
https://www.createspace.com/5685123