An hour before the Super Bowl started, Susan Radosta of Williamsburg got a call that a liver was available for transplant. She went into surgery at 5 a.m. the next morning.
Radosta’s name, along with more than 100,000 others in the United States, had been on the waiting list for a life-saving organ transplant.
About 2,000 people in Virginia are waiting for an organ, and 169 of them are waiting for a liver.
Most will wait six months to a year; it’s getting on the list that’s the hard part, Radosta said.
“I was listed for six months, but it took me three years to fight with transplant doctors in Richmond to get on the list,” Radosta said. “I can’t even tell you how many times I left MCV in tears because the doctors were telling me there’s no way I can get on a transplant list.”
Radosta was diagnosed with polycystic kidney disease 25 years ago, a genetic disorder that causes cysts to grow on the kidneys and often leads to polycystic liver disease. In 2014 she had a brain aneurysm, which caused her liver to triple in size. She became disabled.
“I could have waited quite a while, but I had no quality of life,” Radosta said. “I was not able to eat because my liver sat on my stomach, I spent a lot of time during the day on the toilet because my liver sat on my bladder. I looked like I was over nine months pregnant because my abdomen grew so big from this disease.”
When Radosta was put on the list following a review of her most recent MRI, she had low priority because her liver still functioned.
Patients are placed on an organ waiting list with a medical urgency score based on a series of tests. For some, the medical formula doesn’t work well, and they can apply for exception points to move up the list, which is what Radosta did.
VCU Health Hume-Lee Transplant Center Director Dr. Marlon Levy was responsible for getting Radosta on the list, she said. The request can only be made by doctors.
“What’s clinically difficult about the polycystic liver disease patient is the liver is doing the work it should be doing. If you measure the usual measures of liver failure, you typically don’t find those issues with polycystic,” Levy said. “Within the system, you don’t end up showing to be terribly ill from liver failure. So it’s very common to request extra points.”
Her transplant team in Richmond, which also has an office in Williamsburg, wrote the United Network for Organ Sharing for exception points based on Radosta’s quality of life. The nonprofit organization, under government contract, is responsible for managing the U.S. organ transplant system.
“The sicker you are on this scale based on this formula, the more priority you have for a transplant,” said Joel Newman, UNOS senior communications strategist. “People can, unfortunately, be sick for a number of years but not be at that level of medical urgency where a transplant is even of benefit.”
Transplant Hepatologist Mohammad Siddiqui said the process to get placed on an organ transplant list is patient-specific. They look at all aspects of a person’s condition, such as whether their body can handle the transplant and whether they have a supportive family to help in recovery.
“We want to make sure nothing gets in the way of a good outcome after transplant and the reason is this is a gift, somebody is donating their liver, and we want that to go to the person who would benefit the most from it,” Mohammad said. “It’s a meticulous process. This is some of the reasons why the evaluation of actually getting somebody on the list is protracted.”
Ultimately, there aren’t enough organs to go around. Radosta wants to encourage people to donate organs and encourage those who need an organ to be persistent.
“People don’t mark it off on their license,” Radosta said. “People, when they’re mourning the loss of somebody, they don’t always think about how much those organs can help somebody. They take almost everything from a person.”
Newman said there’s been a steady increase in organ donation in the past five years, and each year for the past six years has set a new record for the number of transplants performed.
Radosta will always be a patient and will take transplant anti-rejection drugs for the rest of her life. But her new reality outweighs the pitfalls.
“I mean, it has just given me a brand new life,” she said. “It’s given me a new life to start over again.”
Martin can be reached at (757)-243-3685, by email at firstname.lastname@example.org or on Twitter at @SaraRoseMartin.