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Research & Innovation, Patient Stories, Family Health

Building Communities to Support Living Organ Donors

BY KATHY KATELLA April 20, 2017

Yale's Center for Living Organ Donors brings donors together and provides lifelong health monitoring.

The last few times Connecticut had snowstorms, Matt Ragaini worked marathon hours plowing and dispatching plows for the city of Bristol. His wife, Jen, marveled at his stamina. Just two years before, the couple were lying in adjoining operating rooms so that doctors could give Matt a section of Jen’s liver. The hope was that this would cure a chronic liver disease called primary sclerosing cholangitis that had stolen Matt’s energy and could have killed him. Before the surgery, “I felt like I was sitting back and watching him slip through my fingers,” says Jen.

Now, my whole life is about organ donation and trying to raise more awareness about it.

Jen Ragaini

Now Matt is robust and healthy, and the spotlight has turned to Jen, who is a member of an exclusive club of people who have donated a liver or kidney to save someone else. Surgeons from Yale Medicine’s and Yale New Haven Hospital’s Center for Living Organ Donors are recruiting people like her to help them expand a pioneering program. The center is the first in the country to create supportive communities of their living donors and provide them with free, lifelong local monitoring for any health issues that may arise related to their donation.

Both Ragainis look forward to participating.

It's about doing the right thing

“It’s all about doing the right thing by living donors,” says Sanjay Kulkarni, MD, who is the medical director of the Center for Living Organ Donors. Dr. Kulkarni has performed all of Yale Medicine’s living donor evaluations since 2004, and 95 percent of its kidney donor surgeries. Dr. Kulkarni and David Mulligan, MD, director of the Yale New Haven Transplantation Center, were among the coauthors of a paper called, “The Long-Term Follow-Up and Support for Living Organ Donors: A Center-Based Initiative Founded on Developing a Community of Living Donors,” published last fall in the American Journal of Transplantation.

Matt and Jen Regaini, with their daughter, Angela, at Yale New Haven Hospital. Jen donated a section of her liver to help save Matt's life.

Addressing the shortage of organs by providing extensive support to living donors is a passion for all of Yale Medicine’s transplant surgeons, says Dr. Mulligan, who is a world expert in living donor liver transplantation. The waiting lists for kidney and liver donations from people who die are so long that more than 1,000 people in Connecticut will wait up to five to seven years for one of those organs. On average, 22 people die each day in the United States for want of a donated organ.

Though Dr. Mulligan would like everyone to be a designated “organ donor” on their driver’s license, he says living donation is an even better solution. “If we don’t have these organs, it’s like having one hand tied behind our back, and we are unable to help our patients,” he says.

Organs from living donors tend to function more quickly and last longer, Dr. Mulligan notes, adding that the quality of organs from deceased donors is deteriorating.  People are dying at more advanced ages, and with such diseases as diabetes and high blood pressure, which can damage organs. “That’s why living donation is such an important piece of this,” says Dr. Mulligan. He hopes living donations will double the number of transplants Yale Medicine surgeons perform in the next five years. “This is such a lifesaving gift,” he says.

For more information about becoming a living organ donor, click here.

Building communities of donors

The idea of building a program around supporting living donors came to Dr. Kulkarni when he noticed that Yale Medicine’s donors were concentrated in and around certain cities and towns where major dialysis centers are located. He created a map of Connecticut, pinpointing clusters of donors in such areas as Bridgeport, Danbury, Meriden, New Haven and Waterbury.

These clusters may be key to making lifelong donor follow-up successful. The strategy has been tried before in several places, notably Australia and Switzerland, but patients haven’t always kept up with annual follow-up visits, Dr. Kulkarni says. That’s where his concept of providing convenient lifelong monitoring within the community arose. “It’s all about location,” he says. “When people feel well, they don’t want to travel to a transplant center to see a doctor.”

Sanjay Kulkarni, MD, talks to organ donors and their supporters at a community gathering in Madison.

So, each month, Dr. Kulkarni and his team visit a different town or city where he knows there are donor clusters. The Center for Living Organ Donors seeks support from town leaders, and schedules the meetings in such central places as libraries and town centers.They invite past and current living donors, friends and families, and they bring refreshments. In addition to checking blood pressure and arranging for free laboratory testing, health professionals are available to talk confidentially and find assistance for any social or medical needs donors may tell them about. Yale transplant caregivers will repeat the visits to each community every year.

So far, Dr. Kulkarni is encouraged to see how donors at the events relate to each other. “It’s really the social aspects of these meetings that I find a bit surprising and really interesting,” he says.

Learning from social networks

Dr. Kulkarni is drawing upon cutting-edge research in the field of social networking to pull Yale New Haven’s past and present donors into supportive communities.

The community-building initiative was influenced by Nicholas Christakis, MD, PhD, a Yale University social scientist whose research has shown how a person’s network of friends, family and others can impact health and health choices, just as genetics and environment do. Dr. Christakis thinks spreading stories about successful organ donations though donors’ social networks could help “normalize” an idea some people see as abnormal. While he won’t make predictions, he says, “If there is a social process underlying these clusters, I don’t know why it wouldn’t be possible to reinforce it.”

Dr. Christakis has also promoted the idea of organ donation “cascades.” If a person has a relative whose life is saved by a living organ donor, that person is more likely to donate an organ and to spread the idea among people in his or her social networks.

Debbie Patton, RN, measures the blood pressure of Mark Kondracky, a living organ donor.

Now Dr. Kulkarni and others involved in the community-building program are figuring out the best ways to enhance the communities using digital social networks. Keren Ladin, PhD, a graduate student of Dr. Christakis who went on to direct the Lab for Research on Ethics, Aging and Community Health at Tufts University, is considering such strategies as message boards and social media. “Each of these communities is different,” she says, explaining that the program will likely tailor approaches to particular communities.

Ladin believes people have questions that may not come up in the doctor’s office, and they may be more comfortable asking them of living donors, either in person or online. For instance, they might wonder how to manage the financial strain a chronic disease can cause. “The donors are deeply rooted in their communities, and they have useful and powerful information that people want to hear,” Ladin says.

Assessing the risks

Getting accurate information out to the community is important, because it’s easy for people to make wrong assumptions about organ donation, Dr. Mulligan says. People may consider the surgeries to be risky, but, in fact, the vast majority of them are very successful when performed by a skilled medical team, he says.

Liver donation is much more complex than kidney donation, requiring a bigger incision. Still, the risk of death for the donor is miniscule—and only slightly higher for liver donation than it is for kidney donation.

For a donation to occur, the donor and recipient must be compatible. The requirements for a match vary depending on the organ, and may take into account such factors as blood type and body size. If the donor and recipient are not compatible, it’s possible for people to participate in an exchange that mixes and matches several donors and recipients, so that everyone gets an organ that works for them.

At a Center for Living Organ Donors gathering in Madison, Sarah McCartin (left to right), Donna DeCrescenzo, Peter Sikes and Lois Onofrio socialize during a break.

People contemplating donation need to know that kidney donations involve taking one of a donor’s two kidneys—the other will take over the function of both. While we have only one liver, it is possible to donate a section of the liver. Since the liver has the ability to regenerate to full size, one donation can sometimes even be divided and used to save more than one life.

While future health problems related to kidney or liver donation are rare, Dr. Kulkarni says lifelong monitoring is critical for early diagnosis and treatment if a problem does surface. Unfortunately, many patients don’t stick to the recommended six-month, one-year and two-year medical follow-up schedule. Hypertension, the primary long-term risk for kidney donors, can surface five to 10 years after donation. Some studies have found liver donors may be in need of more social support up to five years from donation.

“It is our responsibility to make sure these donors—these heroes—are taken care of,” says Dr. Mulligan. “We’re going to be here for them at any time in their life.”

Showing incredible generosity

Keith Lashway last year was prepared to give a kidney to his wife, Rita, to cure her chronic kidney disease and save her from spending the rest of her life on dialysis. The two came to Yale New Haven Hospital from Saratoga Springs, N.Y. As an U.S. Air Force veteran, Keith strongly believes that sacrifice for country and for your loved ones, is sometimes necessary.

Keith wasn’t a match for his wife, so the couple participated in a six-way kidney exchange in which three donors and three recipients arrived at Yale New Haven Hospital for surgery on June 16, 2016. The surgery was minimally invasive, using tiny incisions, and after a brief hospital stay, he recovered outside the hospital as his remaining kidney started the process of enlargement to take over the work of two. After six weeks, he was able to lift his grandson again.

Doctors keep the names of organ donors and recipients confidential, but Keith’s recipient was happy to meet him. They met months after surgery, and he immediately remembered her from the hospital.  “I saw a woman in a lot of pain,” he says. “When I actually met her, she was vibrant. She looked beautiful, happy, with a big smile and tears.”

Keith, 68, says he would donate an organ again if he could. “Becoming a kidney donor was the most rewarding experience in my lifetime,” he says.

Rita calls her husband her “unsung hero.” The first day she had dialysis for her failing kidney she was rushed to the hospital after her blood pressure shot up and she had trouble breathing. It turned out to be the same day the Yale New Haven Transplantation Center called to invite the Lashways to join the exchange. “I am so fortunate and I know that,” says Rita, who doubts she would have survived dialysis for long. “So many people waiting for organs have been through so much for so many years. I do consider it a miracle,” she says.

Donors inspire others

Dr. Mulligan would like to see everyone involved in transplantation—doctors, nurses, donors and recipients—help educate others about living donation.

Many Yale Medicine donors are already spreading the word. Keith Lashway hopes to help by talking to donors in Westchester, N.Y., about his experience. Jen Ragaini had canvassed family and friends, tapped the news media, and started a Facebook page to find support for her husband. Matt had been in and out of the hospital for a year before the surgery. His brother and two friends all offered to donate a section of their liver to help him, but none of them were compatible. He didn’t want his wife to be the donor—the couple had a 9-year-old daughter, and he didn’t want to take any risks.

“But I was running out of time,” Matt says, explaining that his health was deteriorating to the point where his body would soon be unable to accept a transplant. Jen and Matt were only in their 30s when he became sick. He was nearing the point where he wouldn’t have been a candidate for an organ from a living donor, and there was still no guarantee that he would get one in a timely manner.

Today, his health is robust. “I have so much energy now. I’m nonstop. I feel like I’m making up for lost time,” he says. It feels miraculous. Before the transplant, he needed help to get out of his bed or a chair.

Jen is a board member for Donate Life, a coalition of volunteers focused on organ donation, and she’s on the Connecticut Department of Motor Vehicles advisory council on organ donation. The couple and their daughter, who is now 11, coordinate toy drives for patients in the Yale New Haven Children’s Hospital pediatric transplant unit. Their circle of friends now includes donors and recipients—and the Ragainis share their experience whenever they can

"Now, my whole life is about organ donation and trying to raise more awareness about it.,” Jen says.

She doesn’t sugarcoat her liver donor surgery.  She remembers pain, fatigue and a period of insomnia. But she says, “After the surgery, when I saw Matt and I saw that he wasn’t yellow, I realized, wow, I just did that for him.”

It tickles her that Matt suddenly became picky about the type of coffee he drank and got a headache if he didn’t have his regular cup. Before she was the only regular coffee drinker in the house. “They say sometimes you take on some of the characteristics of your donor,” he says.

Other than that, Matt says his relationship with his wife is the same as it always was.  “I love her to death,” he says. “She is my true soulmate. We never fight, we never argue. We get along so well. I think we were put together for a reason.” Given the opportunity, he would do the same for her in a heartbeat.

Donna DeCrescenzo donated one of her kidneys to her son. Now she is dedicated to supporting other living donors and encouraging others to donate.

Another donor, Donna DeCrescenzo, gave her kidney to her son, whose health was failing as the result of IgA nephropathy, a disease that causes inflammation that can damage kidney tissues. “You’re uncomfortable for a very short amount of time, but you don’t remember being uncomfortable,” DeCrescenzo says of her kidney donor surgery.

DeCrescenzo and her son had their surgeries in December. After surgery, her father told a neighbor his daughter was doing fine and his grandson had woken up to say, “I feel better already, Gramps.” Later, the neighbor told DeCrescenzo that she had made a call to the transplant center to inquire about helping her sister, who had been waiting for a kidney for two years. Inspired by DeCrescenzo, the neighbor said, “I’m giving my kidney to my sister."