When Betsy Crais was a graduate student, she started having abdominal pain and other gastrointestinal symptoms and went to her doctor to find out what was wrong.
“He showed me the X-rays—I had black holes all over my kidneys,” she says. Those “black holes” were cysts from polycystic kidney disease.
That was more than 35 years ago. Since then, Crais has undergone two kidney transplants and a liver transplant. She is doing well now and shares her story so others will understand what is involved in organ donation and why it is so important.
Diagnosed with Polycystic Kidney Disease
Polycystic kidney disease, or PKD, is an inherited disorder that causes the growth of cyst clusters, primarily in the kidneys. These fluid-filled cysts are not cancerous, but they can become very large, making the kidneys very large as well. The cysts can lead to kidney failure, high blood pressure and liver problems.
“Polycystic kidney disease and polycystic liver disease are genetic conditions, and they are progressive,” says Neil Shah, MD, UNC Health transplant hepatologist. “It is not the most common reason people need a liver or kidney transplant, but it is also not unusual.”
When Crais saw the X-ray of her kidneys, she called her mother. To Crais’ surprise, her mother told her that she had the disorder, too, but she told her daughter it was nothing to worry about. Her mother didn’t need dialysis—treatment for kidney failure—until she was well into her 80s.
Unlike her mother, though, Crais was in her 50s when her condition began to worsen. By this time, she was on the UNC School of Medicine faculty as a professor in the Division of Speech and Hearing Sciences within the Department of Allied Health Sciences. Her research area is autism.
“My nephrologist did an MRI (medical resonance imaging),” she says. “At our first follow-up meeting, she told me I was going to need dialysis or a kidney transplant.”
Crais had three sisters, and two of them were also diagnosed with PKD. They also had organ transplants in their 50s. Crais and one of her sisters with PKD are doing well. The other sister with PKD died from another illness.
“I had my own support system,” Crais says. “Mother was still alive then. All of us could talk about it.”
Looking for a Kidney Donor
People can survive with only one kidney, so “living donation” is possible, allowing people to donate some organs and tissues while they are alive.
Crais’ husband, Mike Wagner, offered one of his kidneys. He went through months of testing to ensure that he was a healthy match. In the end he was ineligible, though, because he’d had melanoma 20 years before. She would have to find a different donor.
“I didn’t have any idea how to ask for a kidney,” she says. “I put an email together to send to all my colleagues and friends, telling them what was going on.”
Two of her colleagues offered her a kidney. One was ineligible. But the other, Linda Watson, PhD, also a speech and hearing sciences professor, was a match. The transplant took place at UNC Hospitals in spring 2004.
“I was so grateful,” Crais says.
Donated Kidneys Save Lives, but They Don’t Last Forever
But donated organs don’t last forever, Dr. Shah says. Crais’ first transplanted kidney lasted 17 years.
“They (transplanted kidneys) are like an appliance,” Crais says, “some will go along fine for 15 or so years, then they need to be replaced. Others last much longer.”
When she learned that she would need a new kidney, Crais called Watson to tell her the news. “She was so upset, but I told her, ‘Linda, your kidney has lasted me 17 years. What a gift you have given me!’”
Again, Crais reached out to friends around the country, letting them know of her situation. A young autism researcher in Tennessee volunteered to donate her kidney. That transplant was supposed to be in December 2019, but that November, Crais started having fever and chills. Fluid had built up in her abdomen. She went to her doctor and was told she needed to be admitted to the hospital and start dialysis immediately.
“I looked like a pumpkin,” she says. “I had this big belly full of fluid. My kidneys were about 5 pounds each.”
Fluid buildup can cause PKD patients a great deal of discomfort, Dr. Shah says. Because the fluid squeezes other organs and blood vessels, a patient may lose weight and muscle mass and have difficulty breathing. Often, the fluid must be drawn out of the abdomen with a large needle every week or two. Crais was no exception, and endured the discomfort caused by the fluid and its removal.
When Crais was hospitalized, her doctors determined that because cysts were growing in her liver as well, she would need both a liver and kidney transplant. Those organs would have to come from a single deceased donor.
“That’s not uncommon at all,” Dr. Shah says, “to need both a kidney and liver transplant at the same time, for patients who have both organs affected by multiple cysts.”
Waiting for a Kidney and Liver Donor
Before a donor was found, Crais spent a year and a half on dialysis. Three times a week, she would go to the hospital for the four-hour procedure where a machine filters waste and excess fluid out of the blood, doing the kidneys’ work. She eventually got a dialysis machine she could use at home, but the process was complicated and tough on her body. Dialysis causes fatigue for most people; blood pressure can drop, leaving a patient low on energy.
During this time, Crais was added to the list of people who need donor organs. Twice she was called to the hospital on standby in case a person scheduled to get a transplant was unable to receive the organs. Finally, in May 2021, she was first on the list.
Dr. Shah, who was Crais’ hepatologist at the time, says he petitioned the Organ Procurement and Transplantation Network (OPTN) to improve Crais’ place on the list. Her need for a liver in addition to a kidney made her condition more critical than if she had needed only a kidney.
Spreading the Word About Living Kidney Donation
In September 2021, Crais and Carol Offen, a writer and editor in Chapel Hill, published a book called The Insider’s Guide to Living Kidney Donation: Everything You Need to Know If You Give (or Get) the Greatest Gift. Offen had donated a kidney to her son in 2006.
When Crais and Offen, who knew each other through their daughters’ Scouting troop, got together after their transplant experiences and compared notes, they agreed that more information about kidney (and other organ) donation was needed. They wrote the book to answer questions about the medical, emotional and practical considerations of organ donation and transplant.
“We wrote the book to encourage people to consider being a donor and to offer them some guidance,” Crais says. “Back when we were looking for information (2002 to 2006), there wasn’t a lot out there. We wanted to write a practical guide for donors and recipients.”
They have heard from many medical professionals as well as donors and recipients who found the book helpful.
“I even got an email from a pre-transplant coordinator,” Crais says. “She said she was so inspired by all the stories (in the book) that she was going to sign up to be a donor herself.”
Crais says she hopes more people will consider donating organs, either while they are living or after they die.
In 2021, more than 106,000 Americans were on the national transplant waiting list. More than 90,000 of those were waiting for kidneys. That year, more than 40,000 transplants were performed, including more than 24,600 kidney transplants.
“So many people are out there waiting,” Crais says. “When I went back to dialysis after being away from it for 15 years, some of the same people were still there. That just shows how great the need is for donors.”
If you are experiencing symptoms of kidney disease, such as fluid retention, high blood pressure or a decrease in urination, talk to your doctor, or find one here. Register to be an organ donor today.