Sept. 12, 2022 -- Kim Uccellini was only 9 when she had the surgery, but the details remain vivid even 33 years later. When her surgeon made rounds, he brought her a teddy bear. But that wasn’t the best part.
“I remember waking up and feeling more alive than I ever had,” Uccellini says. “I wasn’t feeling tired anymore.”
Uccellini had finally gotten a kidney transplant after being on dialysis since she was 6. At birth, she says, her right kidney had never fully formed, and the other kidney was not functioning properly either. A transplant was the solution.
This year, as always, Uccellini celebrated her transplant anniversary Aug. 7. She was joined by her husband, two children, and other family members. “We were in Cape Charles, VA, on vacation,” she says.
The family shared a feast of crab legs, shrimp, crab cakes, other seafood, and corn on the cob.
As Uccellini and her family celebrated her milestone, the organ transplant community was nearing one of its own.
And on Friday, it happened. One million organ transplants have been performed in the United States, according to the United Network for Organ Sharing (UNOS), the private nonprofit organization that manages the U.S. organ transplantation system under contract with the federal government.
Since the first transplant, a kidney, was performed in Boston in 1954, the numbers of procedures have steadily grown, with 2021 the banner year. “We passed 40,000 transplants for the first time,” says Brian Shepard, the CEO of UNOS. That’s the most ever done in a year in the U.S., he says.
Progress, With Problems
While the milestone is noteworthy, and transplant surgeons call it a “remarkable number” that’s cause for celebration, they also acknowledge that much work needs to be done to address the lengthy waiting list for organs and other major issues.
The transplant system has come under fire recently, both from a congressional committee that has been investigating it for 2 years and from the National Academies of Sciences, Engineering and Medicine, which issued a report earlier this year recommending changes. The industry has been called out for transportation glitches, discarded organs, life-threatening mistakes, and other serious problems.
The challenges are shared by the several organizations making up the complicated transplant system. UNOS oversees 252 transplant centers and 57 regional organizations called organ procurement organizations or OPOs, which service a specific geographic area. A 1984 law created the first computerized government system that matches sick patients with needed organs, the Organ Procurement and Transplantation Network, or OPTN. The government sought bids for an organization to run it, and UNOS has done that since 1986.
While transplant surgeons and others in the industry acknowledge issues, they also point to advances they only dreamed about decades ago.
“It’s a landmark milestone,” says Deepali Kumar, MD, president of the American Society of Transplantation. “Transplant medicine has had a huge impact not only on the individual but also on society. People can live longer, with better quality of life, and it’s also allowed individuals to contribute to society.”
Progress is being made on many fronts, researchers and transplant surgeons say. In one report, a team of researchers highlighted the improved ability to successfully transplant organs into adults age 75 and above, better immunosuppressive management (needed to avoid rejection), and better transplant techniques, among other advances.
“We are making progress in [better] immune suppressive drugs,” agrees Yuri S. Genyk, MD, a transplant surgeon and co-director of the University of Southern California Transplant Institute.
Eventually, one goal would be to find a way to suppress an immune response from the specific organ that was transplanted without affecting the overall immune response, says Timucin Taner, MD, PhD, division chair of transplant surgery at the Mayo Clinic in Rochester, MN.
Survival after transplants has improved, Genyk says. In one recent report comparing the U.K. and U.S., average survival after a transplant was fairly similar, with U.S. rates showing more than 22 years for kidney, nearly 21 for liver, nearly 15 for heart, and over 9 for lung.
Different techniques of organ preservation have also improved, resulting in an increase in organs suitable for transplant from donors, Genyk and Taner say.
According to UNOS, common organ preservation times vary, but now they are:
- 24-36 hours for kidneys
- 12-18 for pancreas
- 8-12 for liver
- 4-6 for heart/lung
Despite these advances, the waiting list remains long. As of Sept. 7, most of the 105,799 people in the U.S. on the transplant waiting list need a kidney. That’s followed by a need for a new liver, heart, kidney/pancreas, lung, pancreas, intestine, and heart/lung.
Every day, 17 people die waiting for an organ transplant, according to the Health Resources and Services Administration, an agency of the U.S. Department of Health & Human Services. Every 9 minutes, someone is added to the transplant waiting list.
As of August, 170 million Americans, or roughly 52% of the population, are registered organ donors, according to federal statistics. For the first half of 2022, more than 20,000 of the 24,414 transplants performed were from deceased donors and 3,702 from living donors.
While 170 million potential donors may seem like a large number capable of handling the need, not everyone who registers as a donor is able to donate. Only 3 of every 1,000 donors end up having a usable organ that allows for deceased organ donation, according to UNOS.
That’s due to a variety of reasons. “Most of that comes down to the manner of their death,” says Shepard of UNOS. The organ needs to be preserved to be able to be transplanted. Someone who has a heart attack at home and dies there won’t qualify, he says. So continuing to expand the pool of acceptable donors is necessary, and also one of the biggest challenges, says Shephard.
Criticisms and Issues
After its 2-year investigation, the Senate Finance Committee held a hearing Aug. 3, noting “a myriad of problems within the industry.” In a statement, Committee chair Ron Wyden (D-OR) summarized the findings. Among them:
- More than 1,100 complaints were filed between 2010 and 2020, complaining that the regional organ procurement organizations did not complete mandatory tests for disease, infection, and blood types.
- A patient in Florida got cancer from transplanted organs, and the organ procurement organization sat on the evidence for months.
- From 2008 to 2015, 249 transplant recipients developed a disease from transplanted organs; a quarter died.
- Failing to deliver organs properly or on time often resulted in organs being discarded.
- The UNOS computer system is “outdated, mismanaged, and insecure.”
- About 6,200 Americans die every year waiting for a transplant, and thousands of organs, including 1 in 4 kidneys, end up being discarded.
Likewise, the National Academies of Sciences, Engineering and Medicine report, issued in February, called out the U.S. organ transplant system as “demonstrably inequitable,” among other problems. People of color, along with rural residents, are less likely than others to get a transplant. Among the recommendations is to achieve equity within 5 years.
Better coordination is needed between the organ procurement organizations and the transplant centers waiting for those organs, one transplant surgeon says. There is often ongoing tension between the two entities, he says, with limitations set up by the OPOs affecting the transplant centers.
Attention also needs to focus on increasing the numbers of living donors, others say. To do that, “we need to remove barriers,” says Kumar, the American Society of Transplantation president. “The main barrier is probably financial,” as donors may need to take time off work, travel to the hospital, and shoulder other expenses.
UNOS says it is addressing the issues and taking actions on a number of fronts, including equity improvement and using more donated organs. As for downtime of the computer system, a point of criticism, a UNOS spokesperson says that since 2003, the system has never been down for more than an hour outside of scheduled maintenance.
Although UNOS doesn’t oversee organ transportation, it is developing applications to help organ procurement organizations and transplant hospitals plan, visualize, and track organ shipments, minimizing the risk of loss.
It is also designing new methods to match donor organs to patients more efficiently.
The Route to a Transplant
Transplant candidates are aware of the issues, but many focus happily on the outcomes and a better quality of life. Dale Jaffe, 67, a hypnotherapist in Ashland, OR, had a kidney transplant mid-pandemic, in June 2021. The need for it wasn’t a surprise. He has high blood pressure and had decreased kidney function for a while, he says. “I was just chugging along.” Then he learned it was time for the transplant.
His wife, Lisa Hubler, 61, also a hypnotherapist, offered to donate one of her kidneys. Dale got approved a week after his wife’s kidney got accepted.
“What amazed me was really how simple it was," he says. “It’s not a complicated surgery.” He credits his “basically good attitude” and using hypnosis to keep himself calm.
Lisa says her decision to donate was a process. “At first, I was like, ‘Of course, I can do that.’” Then, she says, reality sank in. She’s a practitioner of Ashtanga yoga, an intense form, and wondered if she would still be able to do that. (After surgery, she had to take 5 months off.) Many thoughts and questions went through her mind, including: “Why do we have two kidneys if we only need one?”
Now, Dale and Lisa are back to hiking and pickleball.
For others, the process is more difficult. Kim Lute, now 48, a regional communications manager for Morehouse School of Medicine in Atlanta, has had two liver transplants, the first in 1996 and the second in 2001, due to autoimmune conditions that attacked her liver.
An African American person, Lute is writing a transplant memoir, hoping to increase donor awareness within diverse communities. She’s still on a fair amount of medicines and has some issues, she says, but “I like to look on it as I have had a lot of wins.”
And despite all the improvements, a transplant may not last for the recipient’s lifetime. More likely than not, Uccellini says, she will need another kidney transplant, although she is hoping hers will last at least a few years longer. Meanwhile, she says, “I do what I can to keep myself healthy.” She also works in the field to improve the system for herself and others. With a master’s degree in public health, she is a manager of policy and community relations at UNOS, and hoping to make a difference.