When she was growing up on a small Idaho farm, Diana McGuire always dreamed of breaking away to attend college. She excelled academically — graduating as valedictorian of her high school class — and that was enough to earn her a spot at Brigham Young University (BYU) in the freshman class of 1968. It was also enough to get a full-ride scholarship that covered her tuition, fees, and housing.
She was invited to enroll in summer school before the fall semester so she left for the campus in Provo, Utah early that summer. It was the first time she had ever been out of Idaho and her whole world was full of excitement and promise.
But it wasn't long before she started having health issues. Her feet were swelling and she felt fatigued, so she went to the student health clinic and had some blood tests done. Doctors discovered a problem with her kidneys. Kidney treatment wasn't very advanced at the time, so they gave her a corticosteroid and put her on bed rest.
After a couple weeks on the medication she knew she did not feel good enough to return to class. The symptoms continued, and she was spending a lot of her time in the doctor's office. Nothing about her condition was changing, and doctors told her she had nephrotic syndrome, a condition where you lose protein through the urine and kidneys. It was causing her to retain fluid, leading to swelling in her legs and feet.
The symptoms got so bad that she had to withdraw from school before completing her first semester, a devastating blow for the farm girl who dreamed of getting a college degree. She spent seven weeks in the hospital during the fall and stayed on bed rest, but her condition just kept getting worse.
Her doctors at the time wouldn't tell Diana anything, but they told her mom that her condition was terminal. Then around Christmas time she went to the University of Utah to see a nephrology specialist. After a kidney biopsy, her new doctors concluded that she probably contracted a strep infection as a child that was never treated. The bacteria lodged in her kidneys and destroyed them. They discussed the condition with Diana, as well as the treatment options that were available.
"I loved the fact that [the doctors at U of U] would educate me and were willing to talk to me and tell me what was going on," said Diana. "I said 'I can deal with this if I know what the enemy is'."
By summer the following year Diana's condition was rapidly worsening and she was admitted to University of Utah Hospital many times. She felt weak, her hair was falling out, and she looked and felt like a shell of her former self. At 18 years old was forced to confront the idea that she might not live much longer.
"It was hard because I was really a child still, 18 years old with all these dreams and aspirations of what my life was going to be. And now it was ripped out from under me, torn away from me," said Diana.
She was going back and forth to U of U Hospital for treatment, and by August doctors told her she could be a good candidate for a new treatment — at-home dialysis. They would send a large machine to her home that acted as an artificial kidney to filter toxins out of her body because her kidneys couldn't perform that function. She and her mom moved to Salt Lake City for four months to get training on how to use the machine.
The treatment required Diana's mom to put a needle in her arm to draw the blood out, and a second needle to put blood back in. The blood would move from her body through a machine filled with water and dialysate fluid. It would take about three hours total for all her blood to cycle through the machine, and she had to do two sessions, three days a week (a total of 18 hours a week hooked up to the machine).
It was physically demanding for both Diana and her mom, and very emotionally challenging. Neither had any background or training in medicine, and the time commitment was significant to get through all the weekly treatments. Her dad, with the help of several neighbors, built an entire room onto the back of their small house so she would have enough space for the machine, a bed, and the supplies.
By now it was almost two years after her diagnosis. The machine helped her feel better, but not exactly "well." She was still stuck at home and unable to attend school when she met a social worker named Peg Miller who offered to take Diana and her machine to Provo where she could get back into BYU. Diana was able to talk the student health center into keeping the machine in their facility, where she would go three days a week for treatment. She also enlisted the help of a nurse who needed some part-time work and knew how to run the machine.
Diana was thrilled, but it wasn't easy. She was in and out of the hospital throughout the fall semester with congestive heart failure and electrolyte imbalances. She was losing weight, at one point weighing in at only 85 pounds. By Christmas she was, in her words, "a washed out mess."
She went back to U of U Hospital for treatment and doctors had a new idea: kidney transplant. The first successful kidney transplant was performed 16 years earlier in 1954. Dr. Joseph E. Murray in Boston transplanted a kidney from one identical twin to the other, but that didn't help Diana, because she didn't have a twin. In the 1960s doctors developed better techniques for tissue typing to match the blood and tissue types of donor and recipient, and discovered ways to suppress the body's natural immune response to a "foreign" object that would lead to rejection.
Today the U of U kidney transplant program is extremely successful, spanning more than five decades. There are significant innovations in kidney transplant, including increases in live donors — someone who gives one of their two functioning kidneys while they are still alive, like Diana's brother — who can help reduce the overwhelming demand for kidneys with too few donors. Surgeons have also found ways to make it less invasive and reduce the chance of complications.
"The barriers are no longer as prohibitive and as scary to make an organ last decades," said, George Rofaiel, MD. "We have more knowledge, more medications, more ways and options to adjust for events when a rejection does happen."
Back in 1970, Diana was frightened when she first heard about it. She learned that many kidney transplants up to that point were not successful, but it was really her only option. If she continued dialysis she would probably only live a few more years.
They tested her whole family and found that her mom and brother were good matches (at the time they used four antigens to match, today they use 12). Her mom couldn't donate, so she talked to her brother about whether he could do it.
Dan was three years older than Diana and had been serving a mission for the Church of Jesus Christ of Latter-day Saints when she was going through much of the early treatment. When he came home he married and enrolled in college. With so many unknowns about what his life might be like in the future after donating a kidney, it was important that both he and his wife were comfortable with it. He agreed, and Diana prepared her body to be healthy enough for the surgery.
On May 27, 1971 she and her brother went into separate operating rooms at University of Utah Hospital. His kidney was removed and taken to Diana's room for transplant. They left the non-functioning kidneys in there (eventually they would shrivel up, and usually don't cause any problems).
For her mom it was an extremely stressful day to have two of her children undergoing long, intense surgery at the same time. But it went great.
"The minute they put that kidney in, it went right to work," said Diana. "By the next morning all my bloodwork was perfectly normal, and it has stayed that way for 50 years."
Diana was put on medication to prevent rejection. She had regular follow-ups with her doctors to monitor her bloodwork and her body's response. Except for one false alarm where the bloodwork showed signs of rejection, she has never had any issues.
She spent the summer recovering and by fall 1971 could finally re-enroll at BYU where she threw herself into her studies. She got a bachelor's degree in dietetics and went on for a master's degree. She graduated as valedictorian with high honors and met her husband, who was in law school at the time, in the final year of her master's program.
They married 1976, five years after her transplant. Both knew that they wanted to have a family, but with her medical history it was not a guarantee. There were very few studies on whether a woman could have a successful pregnancy with a donated kidney, and the literature that was available was not promising (even under normal circumstances pregnancy is hard on the kidneys).
"I guess I was kind of naïve about it because I thought, we'll give it a try and see," Diana said. Her first child was born without any problems.
Then they moved to California where her new doctor said he didn't support her trying to have more children, which was devastating because she wanted a bigger family. They moved back to Utah where she met Dr. James Scott, a new OB/GYN at U of U ÐÇ¿Õ´«Ã½ who studied inflammatory diseases during pregnancy. He said he would take her as a patient. They created a plan together and she went on to have a total of five children (still the most of any kidney transplant patient in the world).
"He became like a miracle worker in my life because he accepted that I wanted to have a family," said Diana. "He wrote articles about doctor-patient relationships and how they can work together to meet the goals of the patient. He put tremendous trust in me, and I put tremendous trust in him."
She raised her big family in Kaysville and worked as a part-time dietitian in public health and hospitals. When her children were all in school, she started teaching BYU and U of U students, eventually becoming a full-time instructor in dietetics at BYU. Her career as faculty lasted approximately 25 years, and at retirement, she was a full-time professor in rank.
Diana now has 23 grandchildren (with another on the way). She and her entire extended family often celebrate Uncle Dan and his choice to donate a kidney that made her life possible. Dan is still living with his own remarkable family, and like Diana, his kidney health has remained normal since 1971.
"If anyone is extraordinary in this story, it's my brother," said Diana. "If you told me back then that I would be celebrating 50 years of having this kidney, I don't know if I would have believed you. It was a lot of luck with the right match at the right time, and great medical care."
After the very real possibility that she could have died at such a young age, Diana wanted her life to have purpose. She spends her time making the world around her better, mentoring young people, serving in her church, and trying to leave a positive legacy.
The biggest barrier for kidney transplants today remains the availability of donor kidneys, said Dr. Rofaiel. For every successful kidney transplant performed, five people are still waiting. But there are promising trends. Awareness of the safety and efficacy of live donors is increasing. Telehealth allows doctors to evaluate donors from far away to find good matches. Live donors can have a kidney removed and recover in a few days, rather than several months. Most will be able to return to their normal lives within just a matter of weeks.
"A whole lot of innovation is happening in our field today, there is no end in sight to how much better we can make [organ donation]," said Dr. Rofaiel.
"My life has been a miracle, I just feel like I have been able to fulfill all of my dreams," said Diana. "I am forever grateful for the great medical doctors at the University of Utah that could give me that miracle."
