By: Leslie Gonzalez
Vil kidney 4/19
Organ donation saves daughter
Patricia Manus of Lynbrook is someone who knows how to share, but when she learned her eldest daughter's illness would require a kidney transplant, she made a noble sacrifice: she gave up one of her own.
Manus, 54, is very slender, the result of a 13-year, eight-mile carrier route for the Lynbrook Postal Service. She is married 32 years to her husband, Michael, a sheet metal foreman for the New York City Transit Authority and a talented woodworker. Pat enjoys baking and spending time with her family. She has three daughters: Jen, 30, Jessica, 27, and Alison, 25, and an 8-year old granddaughter, Lindsey.
"She's not one to be boastful," her husband said, but Pat speaks tearfully when describing the emotions she has felt for months.
The front door opens, and Pat's daughter Jen walks in, speaking enthusiastically and looking very healthy. It is hard to believe that both mother and daughter underwent laparoscopic kidney operations less than four months ago. They sit comfortably on a couch, each wearing matching lockets with each other's picture, a special gift from Alison's husband, Anthony. Jen Pickering of Levittown is a social worker married nine years to her husband, also named Michael, who is a United Parcel Service worker. Both women share their incredible experience with a great sense of humor.
Jen was diagnosed with polycystic kidney disease (PKD) eight years ago, when she suffered high blood pressure early in her pregnancy. A sonogram revealed cysts outside and inside both of her kidneys.
"She had it from birth," said her mother. Jen never had any symptoms, but both mother and daughter described how she was always thirsty. As a result of her condition, Jen's daughter Lindsey was born seven weeks premature, and weighed only three pounds at birth.
Jen continued to take medication to lower her blood pressure and saw her doctor every six months until last August, when she was told that the cysts had enlarged, requiring dialysis or a kidney transplant.
"I was convinced I was going to die," Jen recalled. "Only half of those diagnosed with PKD need a transplant, so I thought it would never happen to me."
The news shocked the rest of the family.
"I was so upset," said Pat. Because Jen did not yet need dialysis, it was an ideal time to have a transplant operation. A relative referred the family to Dr. Khalid Butt, a well-known transplant specialist from Westchester Medical Center whom he had met at a seminar. The family attended an educational conference held regularly at the hospital for potential donors.
Caring relatives offered to be tested at the hospital for organ compatibility. A simple blood test was taken, from which a blood tissue sample was examined. Pat and husband Michael were both tested, but Jen's two sisters were not.
"She didn't want them to have to make that decision," explained Pat. Ninety percent of mothers are compatible kidney donors, and Jen's mother was found to be a first-choice match. She underwent a full, head-to-toe physical, complete with x-rays, to ensure optimum health. Thinking back, the two laughed at how cooperative they were. "When it's family, you will do anything." The health checks were repeated prior to the transplant.
The operation was scheduled for Wednesday, December 27, when Jen's sister Alison, a school teacher, would be able to take care of her daughter, Lindsey. "It was fortunate to be Christmas time, so we had something else to be preoccupied with." Lindsey was happy that Aunt Alison stayed for a week. She received a computer for Christmas; her mother was about to get the gift of life.
Jen never told Lindsey about the transplant until the day before the operation. Wishing to remain an only child, she asked her mother not to bring home a baby from the hospital.
Both mother and daughter arrived early for the 8 a.m. operation. At only two days after Christmas, one of the nurses became emotional when she heard what was about to happen. Pat went in first, and Jen followed only minutes after, as their husbands waited. Both were so nervous, Pat explained, that they refused to refer to the operation a transplant. Instead, they called it a "procedure" to ease the tension.
The six-hour operation took place in adjoining rooms. "They were fabulous," both women said of the medical staff. Jen's husband's wellness insurance covered the operation. Both received hundreds of cards, flowers and presents.
In recovery, their first words were, "How is she doing?" Both could see across to each other, but were purposely spaced apart to discourage their natural instincts to get up for one another. Pat, who was walking around the following day, was the first to recover. She was released from the hospital Friday, while her daughter, whose medication delivery was delayed due to a snowstorm, was released the following Monday, New Year's Day.
"I feel fabulous," said Jen. "I'm no longer so thirsty. In fact, I have to remind myself to take in fluids." In the days following the operation, the two found themselves dressing alike.
"We are very much alike. We were close before, and even more so now." Jen says her happiness and thoughts of recovery exceeded any mild discomfort she may have felt. "Lindsey was my little nurse." Her daughter helped take her blood pressure and temperature twice a day for the first two weeks. Thankfully, Lindsey was not born with the same illness.
Both mother and daughter returned to the hospital six weeks after the transplant to tell others about their experience. Jen belongs to the Polycystic Kidney Foundation, and is a member of the Transplant Recipient International Organization (TRIO), through which she has since visited Oceanside and Garden City High Schools to promote organ donation.
The most common question asked is whether someone can live with only one kidney. "Oh, goodness, we hope so," the two respond, looking at each other. "We did it!" By natural growth, the single kidney that remains in both of their bodies will enlarge to do the work of two.
"There are three post-operative phases for risk of rejection: the first two weeks, the first three months, and the first year," said Jen, who has just passed her three month milestone. Her 25 post-operative medications have been reduced to about 12, and will further reduce to about five or six by the end of her first year. Other follow-up procedures include medication to prevent rejection. She will need to take it for the rest of her life.
Although she was granted time off until April 1, Pat returned to work in mid-February after only six weeks of medical leave. Co-workers decorated her desk with balloons to celebrate her return. Residents along her Scranton and Union Avenue postal route, including the tenants at 151 Union, kept her spirits high with their well wishes.
"We were amazed at how well she bounced back. She's a real trouper," said Richard Kimball, her postal supervisor.
Prior to her operation, Jen worked for the Education Assistance Corporation in Hempstead. She has not yet returned to her job, but remains on-call as a substitute teacher for the Levittown School District. "My husband can't wait for me to go back," she laughs. She plans to return to school in September for her Master's degree.
"It may seem frightening, but it isn't as scary," Jen said, reflecting on their operation. "When you see so many people waiting for a transplant, it's an easy decision." Jen's husband has since signed the back of his driver's license to become an organ donor.
"I feel wonderful that I was able to help someone else, and save a life. It's rewarding, and yes, it can be done," Pat said.
BOX: Organ Tissue Donor Week
More than 74,000 men, women and children currently await life-saving transplants, and every 14 minutes another name is added to the United Network For Organ Sharing National Transplant Waiting List. Organ and tissue donation gives one person the opportunity to save and enhance as many as 50 lives.
While it is important to talk about end-of-life decisions including organ donation, it is becoming more common to donate organs and partial organs while living. Kidneys are the most common organ donated by living donors. Other organs that can be donated include partial liver, lung and pancreas. There are many benefits to living donation, but there are also risks to the donor. The remaining kidney will enlarge to do the work that two healthy kidneys share. The liver has the ability to regenerate and regain full function. Lungs and pancreas do not regenerate, but donors usually have no problems with reduced function.
Once you have decided to become a donor, the most important step is telling your family. Most American's support donation, but few have told family members their decision to donate. For more information, visit the Web site www.livingbank.org.
Source: The Coalition on Donation
