By Laurie Leavy—
The consideration of organ donation may be a difficult decision for some, or not a hard choice at all for others. That same decision could afford someone the opportunity to be called a hero, like Jocelyn “Joy” Pascua, of Tarrytown.
After Pascua passed peacefully last December, the prospect of her legacy living on through organ donation was presented to her daughter by the staff at Phelps Hospital.
“She didn’t designate as a donor on her license,” said her daughter, Ayla Kim. “But based on how giving she always was, I know this is what she always wanted. I remember in the summer, she said, ‘Ayla if anything ever happens to me, I want you to make sure I make others happy, other families happy.’”
To date, Joy’s organ donation has helped four different people (lung, liver and two kidneys), with the potential for another person to benefit from the donation of her eyes. Her bones, tissue and skin was given to New York University for research. Ayla was also able to write to and virtually meet the recipient of her mother’s kidney, a 58-year-old woman named Joan.
“With each notification about a match to a transplant, we felt one step out of our grief,” Ayla explained. “Everything else got less heavy.”
Joy’s partner, Jerome Chan, who is employed at Phelps, agrees. “I was just in awe as soon as we heard about the possibility and thought it would be a good way to alleviate our grief. Knowing she has helped so many people carry on her legacy is amazing. I’m glad we were given the chance.”
When Ayla talks about the prospect of Joy’s eye donation, she talks about the possibility of her own tears. “If I have the chance to meet the recipient of her eyes, I would probably just collapse. I would be looking at the eyes that looked at me when I was born, when I walked down the aisle to graduate. I would want to give them a hug.”
Statistics from LiveOnNY, an organization of more than 200 clinicians, educators, social workers and others dedicated to organ donation, show that, nationally, most patients wait one to two years for an organ transplant. In New York State, most patients wait three to five years. LiveOnNY facilitates the process with a network of hospitals and transplant centers from Poughkeepsie to Long Island, serving more than 13 million people.
According to their website, there are two types of donation: living donation and deceased donation. Living donation provides an opportunity for an individual to save a life while still living. Living donors may donate a kidney, a third of the liver, and in some rare cases, a portion of the pancreas or intestine and a lung. Deceased donation occurs after the prospective donor is declared deceased by a physician.
“Jocelyn is no doubt a hero,” said Ali McSherry, a representative of LiveOnNY. “Organ donation is an incredible way to leave a lasting legacy and this family embraced the prospect of helping other families. I was so impressed with her daughter.”
Ayla, a high school senior, is now an organ donation advocate, completing research and has a goal to continue to raise awareness with a community project in Tarrytown.
Advocacy and donations are the key to helping close to 10,000 people waiting for organ donation in New York State alone. Anyone can register to donate at LongLiveNY.org, on their driver’s, hunting or fishing license or when they register to vote.
“I’ve seen a mother hearing her son’s heart in someone else’s chest,” McSherry said, “And I think of it as a candle in a dark room because losing a loved one is devastating. That candle can bring peace during a very difficult time.”
Now with the experience first-hand, Ayla and Jerome know both the light and the limitations of the process.
“Not everyone is a match even if they have someone who is willing to donate,” explained Jerome. “If it’s not, we need more potential donors. Even if the recipient is a match, it may not work out. Then what’s after that? Another waiting game.”
The potential of the waiting game for a potential donor is real for Port Chester resident Liz Rotfeld, who was diagnosed with IgA nephropathy more than 20 years ago, a chronic kidney disease caused by deposits of the protein immunoglobulin A (IgA) inside the filters (glomeruli) in the kidney.
“My brother planned to be my kidney donor but because he had a surgery and an issue with one of his kidneys, he couldn’t,” explained Rotfeld. “You don’t just go on the list. Your kidneys need to be at a certain function to be on a list. I put a post on Facebook about my “journey for a kidney transplant” and so many people reached out. A friend got tested but there were complications. And from the post, a woman I haven’t seen since high school sent me a private message offering help. It was pretty special- incredible in fact. Someone I haven’t seen in 20 years!”
Then Rotfeld received an unexpected call from her ex-husband’s side of the family. It was Labor Day weekend of 2020. Her ex-husband’s cousin’s son, Matthew Pober, of Manhattan, reached out.
“We are all still close,” she said. “He (Matthew) said ‘I’ve talked with my family and I want to get tested to be your donor. It was amazing. A young single man doing a very extremely selfless act.”
According to the American Kidney Fund, kidneys from living donors can sometimes last almost twice as long as kidneys from deceased donors. On average, living kidney donor transplants last 15-20 years.
“I felt compelled to know if I was a match when I found out what she needed done,” said Pober, “and a lot of my family and friends were hesitant but I did my research. I felt there was little risk and I was not worried about long term health issues, or even scared of the surgery itself.”
After being tested last September, Pober came to a realization. From deciding to move forward, to signing up to be tested to the potential operation and transplant, if someone needs a kidney, it is “pretty darn slow.”
“We all know how health care works- it’s money driven. I would get an ultrasound, then need CT scans. I would ask myself ‘why are we doing baby steps forward when there are other advanced technologies that can be used first?’”
Pober explained that is only part of his journey. He contracted COVID19 later in the year and could not complete further testing until he tested negative. Then, fast forward to Monday, March 8.
During his latest round of testing, Pober learned his blood pressure was slightly elevated, and, right now, is no longer eligible to donate to Liz. Emotions are high.
“There are some real takeaways from this,” said Pober. “From the very beginning of talking to her, there is some guilt on the person if they know the donor. It is the guilt you are doing it for them. When we found out I was no longer eligible, she was apologizing to me saying ‘I’m sorry everything you went through.’ And there are certain sacrifices, but I couldn’t believe she was apologizing to me. I think what is missing from the donation process (in this case) is a social worker following both donor and recipient throughout the entire process. There can be work on denial, guilt and all the emotions on both sides because they are real. This is another whole way of asking for help.”
“It’s scary to think about your family and death but donation can bring peace in a dark time. It’s is the thought that there loved one did this heroic act,” said McSherry. “During this time of COVID19, LiveOnNY has put a lot of processes in place for safety. As New York State was hit first, we have also did a lot of research at the onset which we have shared across the country.”
After organs are transplanted from a deceased person, remaining family members receive limited information about the recipient. Ayla has since learned that Joy’s liver was transplanted to a 38-year-old male from Washington D.C.
“It will take six months to know more information, but I’m 39 years old,” said Jerome. “It could have been me.”
The organ donation experience has also left Pober with a distinct outlook on life. “It’s easy to have extra drink, eat some fries but the process allows you to learn more about yourself- make smarter choices. You learn to not take your health for granted and, in the process, I grew as a human being.”
Rotfeld, now on a new journey to find a donor, said, “I think a lot of people don’t mark their license and it’s a shame. Younger people have healthier organs that can save a life. And, in turn, those who lose a loved one can see that life make a difference and that is incredible.”
For more information, go to LongLiveNY.org to register as an organ donor.