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kidney transplant

From left, Eleanor Lalima and Lisa Figueroa Filosa. Photo from Stony Brook Medicine

Two best friends on Long Island are now sharing a bond like no other, a set of kidneys.

Eleanor Lalima of Ronkonkoma and Lisa Figueroa Filosa of Deer Park have been best friends since they met in the 1st grade. Through getting married and having children of their own, the duo have stayed close throughout their more than 30 year friendship, so it wasn’t a surprise to anyone they knew when Lisa answered the call to help out when her friend needed her most.

Eleanor has been battling kidney disease since age 16. Not only did she face the disease, but she lost both her mother and her brother to kidney disease. While a patient at Stony Brook University Hospital (SBUH), Eleanor learned her next treatment option was receiving a kidney transplant. 

Soon after, Eleanor put out a call for help on Facebook. Several of Eleanor’s family and friends reached out right away to get tested including her lifelong best friend Lisa. Lisa was actually the first to get tested and called Eleanor to tell her she had a good match for a transplant.

“My mother was on the transplant list for over 8 years due to her rare blood type and she didn’t get the same chance I have now,” says Eleanor. “To get a kidney in such a short time is really amazing and it gives me a chance at a better life.”

Dr. Wayne Waltzer, Professor and Chairman of the Department of Urology and Director of Kidney Transplantation Program at Stony Brook University Hospital, and Dr. Frank Darras, Clinical/Medical Director of the Renal Transplantation Program at Stony Brook University Hospital, who cared for other members of her family, played a large role in Eleanor’s treatment at Stony Brook.

“Kidney disease can take a toll on an entire family. Being a transplant surgeon and being able to assist in restoring one’s quality of life is truly a rewarding experience,” said Dr. Darras. “But the true hero here is Lisa. Without her none of this would have been possible!”

On May 25, spirits were high as Eleanor and Lisa went in for surgery at SBUH. The surgery was a success and the friends were discharged within a week.

“Just when you think a lifelong friendship can’t be any stronger, you share a kidney,” said Lisa.

Kidney disease affects an estimated 37 million people in the U.S. (15% of the adult population; more than 1 in 7 adults). It is the leading cause of death in the U.S. according to the National Kidney Foundation, causing more deaths than breast cancer or prostate cancer.

For more information about Kidney Transplantation Services at Stony Brook Medicine, visit stonybrookmedicine.edu/patientcare/transplant.

Yolanda Reed-Anthony took this selfie 15 minutes before her transplant.

By Daniel Dunaief

Yolanda Reed-Anthony’s grandparents, Dr. Frank Darras, and an anonymous donor likely saved the life of this devoted wife, mother, and daughter.

In the midst of the COVID-19 pandemic, which forced Governor Andrew Cuomo (D) to shut down most of New York’s economy and limit hospital activities to emergency procedures, Reed-Anthony had an unusual dream. In the dream her late grandparents, William and Rose Evans, brought her a white box. When she opened it, multicolored butterflies fluttered around her.

Intrigued by the dream, Reed-Anthony read that it suggested a new transition in life.

Sure enough, later that day, the Holbrook resident received the kind of call her brother Richard Reed, Jr. and her father, Richard Reed had gotten for themselves: a kidney was available, thanks to an anonymous donor who was a match for her.

The family has struggled with a kidney condition known as focal segmental glomerulosclerosis (FSGS), which necessitates the use of dialysis at least twice a week.

The timing for Reed-Anthony made the decision about whether to accept the incredibly rare gift of a new organ problematic. “The thought” of passing up the kidney on March 12, in the midst of the pandemic “crossed my mind, but I quickly dismissed it because of the dream,” she said in a recent interview.

 

Yolanda Reed-Anthony with her brother Richard Jr. after his kidney transplant in January.

Reed-Anthony entered Stony Brook University Hospital, where Dr. Frank Darras, the Clinical Professor of Urology and Clinical/ Medical Director of the Renal Transplantation Program at Stony Brook Renaissance School of Medicine, awaited, along with a transplant team.

As Suffolk County became an epicenter for infections, with the number of sick in hospital and Intensive Care Unit beds increasing, people in need of organs faced increasingly difficult odds of finding a life-saving organ.

For starters, every person who became sick or died from COVID-19 was immediately ineligible to be a donor. Without effective treatment or a cure for the virus, the transplantation of an organ from an infected person into someone who needed the organ but likely couldn’t survive the infection raised the risk of such an operation above the benefits of the procedure.

The immunosuppressant drugs each organ recipient takes after the operation reduces the likelihood that the person will reject the organ. These drugs also, however, raise the chance that an infection of any kind, much less a lethal virus, would threaten the health and life of the recipient.

Reed-Anthony said the Stony Brook staff let her know that the hospital process would be different even than for her brother, who received his kidney in January.

The doctors and nurses made sure no one who wasn’t supposed to be in her room entered. “They were like secret service for me,” Reed-Anthony said. “They took precautions for me that were different than for my brother and father,” adding that she was well aware of the viral struggle that so many others in the hospital were enduring at the same time. She was in the hospital for five days by herself, with no visitors other than the medical staff.

Reed-Anthony said the staff was ad-libbing in the precautions they took with her, minimizing the risks during her period of extreme vulnerability. Several days after surgery she needed to walk, which is something her brother and father did up and down the hospital hallway. She never left her room, circling from the bed to the window to the bathroom at least six times.

Yolanda Reed-Anthony with her father Richard after his kidney transplant.

The social workers, meanwhile, stood by the door to ask questions, while the dietician wasn’t allowed in the room, with the nurses bringing the food tray in and out of the room.

Dr. Darras, who performed the surgeries for Yolanda, her father and brother, explained that the transplant team understood and appreciated the extreme demands COVID-19 placed on Stony Brook University Hospital and on the health care system throughout Long Island.

“We knew we had to work within the framework of the administration and the hospital to try to do what we needed to do for our patients without infringing on the big picture,” Darras said. “We knew we had to be good team players because every department had to have a redeployment of staff into other areas of the hospital.” Still, within the unprecedented needs of the rest of the hospital, the transplant team still felt like they could do what they needed safely for patients working against the unkind ticking of a clock.

While it took significant effort to find safe areas for the transplant group to use, Darras and other surgeons performed life-enhancing and saving surgeries in the midst of the COVID-19 firestorm.

Indeed, Darras led one of the transplants at 3:30 am on a Saturday night, when so many of the staff might otherwise have been sleeping, relaxing or stepping away from the intense health care drama that surrounds them. The mood in the room, however, was positive.

“Everybody that was involved felt that it was a really happy moment,” Darras said. “You couldn’t have found a happier group of people.”

The health care workers appreciated the opportunity to use their training towards a positive outcome. “Out of being in the fire, something good was happening,” said Darras. “It was a happy surgery. It gave people a reprieve and they wanted to do this again.”

Darras appreciates the heroic efforts of so many of his colleagues, who have done yeoman’s work in the face of the pandemic. He also believes the efforts of the transplant teams were heroic in taking care of patients who had life-altering surgeries in a unique environment.

At the same time that doctors and support staffs found safe places for these procedures, LiveOnNY, which is the nonprofit organ procurement organization for New York City, Long Island, Westchester and the lower Hudson Valley, has struggled to find donors during the pandemic.

For starters, everyone who contracted the virus became ineligible to donate an organ. Even those people who had filled out organ donor cards couldn’t save or extend the lives of others if they had the disease. “With so many deaths related to COVID, the potential for organ donation has been drastically reduced,” Helen Irving, the CEO of LiveOnNY said. In January and February, LiveOnNY was involved with 51 organs donations each month. In March, that number surged to 67. In April, as New York reached its viral peak, the number of organ donations fell to 10.

While Stony Brook University Hospital performed organ transplants during the pandemic, other donation programs slowed or stopped due to the virus. That is starting to normalize now, according to LiveOnNY.

Irving said the reduction in the ability to perform these operations is “quite devastating.” She has been acutely aware of the hospital deaths during the pandemic. New York State law requires hospitals to call any death into the organ procurement organization. At one point, LiveOnNY was receiving over 600 calls each day, when the normal number is closer to 150.

Additionally, with people avoiding the hospitals, even when they might have life-threatening conditions, the potential for organ donation also declines.

In normal times, LiveOnNY receives about 12 referrals per day from cardiac arrests or strokes. During the peak of the pandemic in early April, they averaged four. “If someone dies at home, there is no potential there to be an organ donor,” Irving said, although they can become a tissue donor.

Through the pandemic, Irving suggested that LiveOnNY will continue to search for the needle in a haystack that saves or extends someone’s life. The nonprofit is a part of a network that extends across a wider geographic area beyond New York. The group is part of 58 organ procurement organizations nationwide.

Irving encouraged New Yorkers to sign up to become donors, particularly in a post-COVID world. Typically, she would be making the case for signing up to become organ donors through community events. At this point, however, most of those events are no longer being held because of limitations on large gatherings.

“We have to educate the community that needs to know that organ donation is still possible,” Irving said. “Patients can’t wait on a transplant list. That message is far more important today than ever before. You can save someone’s life by signing up on the registry.”

People who would like to sign up can do so through the LiveonNY.org web site, by calling (866) NY-DONOR (693-6667) or through [email protected].

Organ donations were “always a miracle to begin with,” Irving said. “Now we’re asking for a bigger miracle.”

Reed-Anthony has signed up to be an organ donor herself. She is prepared to donate any organ a recipient might need. After all she and her kidneys have been through, she suggested those organs might not be the best choice.

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Father Jerry Cestare and Kara LoDolce right before the kidney transplant procedure in January. Photo from Kara LoDolce

A blossoming love led to a lifesaving procedure for a local priest.

Kara LoDolce, left, with her fiancé, Scott Alu, and his children. Photo from Kara LoDolce

In January, Setauket resident Kara LoDolce donated her kidney to Father Jerry Cestare of St. James R.C. Church. When LoDolce first told him that she was going to donate her organ, he said he couldn’t believe it.

“I don’t know how many people can be that selfless,” he said.

The 55-year-old priest said his kidneys were compromised about nine years ago, and while he was careful about his health, at the beginning of last year he felt tired all the time and went for medical testing. He found out he had kidney failure and started dialysis in May, something he said is not a long-term solution for someone his age.

The priest said when doctors first told him to actively start looking for living donors, he felt hesitant because he grasped that someone was giving up something precious. While a few family members were tested, they were found not to be matches, and he couldn’t bring himself to ask others.

“How could I ask someone to do something like that just because I was sick?” he said.

Cestare said while he wasn’t afraid of dying or being incapacitated, he was afraid that he would lose what he loved to do — ministering.

The priest said the chain of events played out like a Hallmark movie.

LoDolce, 46, said she was compelled from the second she heard Cestare needed a new kidney. She and her fiancé, Scott Alu, 42, credit the priest for indirectly helping the two of them meet.

LoDolce said her soon-to-be husband met her in a gym, while he normally wouldn’t ask out a woman with tattoos, which she has, he remembered a recent conversation he had with Cestare. Alu was talking to the priest about looking for a relationship after a divorce, as well as being a father to two children. LoDolce said her fiancé was told to keep an open mind by Cestare, saying, “One thing that God does is he takes the broken pieces of your life and kind of reshapes them into something new, and you just have to be open to opportunities. You have to be open to every opportunity that God puts in front of you.”

When she met Alu, LoDolce lived in Sound Beach, but she said 2½ years ago she moved in with him in Setauket, and she’s been going to the St. James church ever since.

LoDolce said while the church didn’t make an official announcement about Cestare’s condition, she was waiting to hear back from him to discuss her upcoming wedding in May. She was surprised when he didn’t get back to her, and she asked the receptionist who filled her in on what was happening.

When she and her fiancé met with him, she asked if he was on the transplant list. He told her it would be a five-year wait due to his blood type being B+. After the meeting, she called her mother and found out she was B+ also. When she dropped off paperwork, she left Cestare a note saying she would like to be tested.

She went in for the tests and right before Christmas discovered she could donate her kidney to the priest. She bought Cestare a stuffed kidney-shaped toy and gave it to him along with a card and a letter.

“She’s about to start a whole new life, and she’s thinking of me.”

— Jerry Cestare

He said when she gave him the gift, he didn’t open it right away and brought it to his parents’ house where he was going for dinner. When he opened it, he was surprised by the beautiful card and then began reading the letter where LoDolce told him she was a match.

His father asked him to repeat what she wrote because he, “couldn’t believe it,” and the priest said he and his mother started crying.

“Kara felt from the beginning if she could undergo a few weeks of discomfort so that I could get back to work and do what I do best, she said it was worth it,” Cestare said.

The priest decided to announce the good news to the parish at Christmas Mass. Even though he didn’t want the service to be focused on him, he felt LoDolce’s act of kindness symbolized the season.

He said many faiths talk about love but LoDolce, he said, showed it through action and gave him his life, health and ministry back.

“Lots of people talk about love, this woman showed with her action what love is,” he said.

He said Kara and her fiancé received a few standing ovations from the parishioners at the Mass after he announced she was donating her kidney to him.

“She’s about to get married,” he said. “She’s about to start a whole new life, and she’s thinking of me.”

LoDolce said she never wavered from her decision.

“People tell me I did something for him, I don’t feel that way at all,” she said. “I truly feel like he did something for me and he changed my life.”

While most take three or six weeks before they can even go back to work, LoDolce said she felt great after a week, and she was walking two or three miles a day. She also credits both of their recoveries to the parishioners and friends.

“Everyone in the Three Village community has been praying for us,” she said.

LoDolce said she is now putting the finishing touches on her May wedding.

“I joke that both my kidneys will be going to the wedding,“ LoDolce said.

Cestare said he has found the story has inspired others who have heard it with many telling him that they are going to pay it forward by being a better person.

“God is using this experience not only to give me back my life but to touch the lives of others,” he said.

“People tell me I did something for him, I don’t feel that way at all. I truly feel like he did something for me and he changed my life.”

— Kara LoDolce

SBU experts explain living organ donations

Father Jerry Cestare and Kara LoDolce went to Stony Brook University Hospital for their transplant procedure. The priest said many may think they need to travel to New York City for such a procedure, but SBU has a transplantation program right on Long Island.

Dawn Francisquini, administrative director of Stony Brook Medicine’s Kidney Transplantation Services team, said the hospital has been performing the transplants since 1981. She described the program as family friendly and said the staff’s goal is to make patients feel like a person — not a number.

“They know when they come to us they’re going to receive personalized care,” she said.

The first step, she added, is to educate the patients and their family members about the entire procedure as well as what needs to be done before and after. She said it’s important for the family to be part of the conversation because there is a lot of information to be taken in. She added that a transplant is not a cure for kidney disease but a treatment.

Stephen Knapik, living donor coordinator at the medical center, said finding a living donor can save a person’s life as the waiting list for organ transplants can be several years long. 

“I tell all the recipients you have to be your own living donor champion,” Knapik said.

He said he advises patients if they’re uncomfortable asking to get a friend to help spread the word. He also said sharing on social media has been successful in many cases, where after a request is posted, “The next thing you know I’m getting phone calls.”

Knapik said his role in transplants is keeping donors safe. In the case of Cestare’s transplant, he worked with LoDolce. He said donors go through multiple tests including CT scans, chest X-rays and cancer screenings such as mammograms and Pap smears for women and colonoscopies for those over 50.

“I tell all the recipients you have to be your own living donor champion.”

— Stephen Knapik

Once a donor is cleared through testing, a transplant team committee will discuss the donor.

“We want to make sure that we have dotted all the I’s and crossed all the T’s to keep the donor safe,” he said.

Knapik said once a donor is found the transplant team will work with the schedule as far as when the surgeries will take place. For example, he said, a teacher can wait until summer. All the costs are paid by the recipient’s insurance.

He said while LoDolce was quickly back to walking and resuming her normal routine, it’s unusual. Many donors may take weeks to recover fully and can’t drive for about two weeks or lift heavy objects for a few weeks.

“Everybody heals differently,” he said.

He added that after the procedures donors will be required to have checkups to make sure their remaining kidney is compensating and doing well.

“We can take anyone’s kidney out, but we have to make sure, 10, 20, 30 years later, that the remaining kidney is doing well,” Knapik said.

Francisquini said out of the 1,800 transplants the program has done since its inception, 1,000 patients still come to SBUH for routine follow-ups. She said anywhere from 270 to 300 patients are on the active waiting list at any given time, while another 200 can be in the evaluation process. The kidney transplant team performs 75 to 80 procedures a year.

“We have one of the fastest transplant rates in our region,” she said. “So that basically translates into if we put you on the list, we’re serious about transplanting you. We transplant you as quickly as possible.” 

To learn more about Kidney Transplantation Services at Stony Brook Medicine and how to become an organ donor, visit www.stonybrookmedicine.edu/patientcare/transplant/organ_donor.