It wasn’t until her mid-30s that Pam Sini of East Setauket learned she had serious kidney problems. As a young child, doctors had misdiagnosed her condition as polio, and she underwent treatment common at the time for polio that involved having her limbs wrapped to prevent paralysis.
When Pam Sini, wife of Mather Board Member John Sini, was diagnosed with high blood pressure almost three decades later the cause was discovered to be her kidneys. "My blood pressure was 196 over 138," she said. "That’s when doctors discovered I had one nonfunctioning kidney – it was the size of pea – and damage to the other. Doctors told me the one functioning kidney could go 20 years before I needed a transplant. It went 19 years."
When that kidney failed, she received a kidney donated by her sister. "My surgeon told my sister at the time, ‘You’ve just given your sister the gift of life,’" she said. That kidney lasted about 10 years but now must be replaced, and Pam Sini is again searching for a donor.
Pam Sini is among the thousands New Yorkers awaiting an organ transplant. According to the New York Organ Donor Network, which serves the Greater New York Metropolitan Area including Long Island, more than 8,370 people were waiting for organ transplants in its service area as of April 2013. The majority of those – more than 6,670 – were waiting for kidneys.
While most organs are transplanted from a person who is deceased, kidney donations can be made by living donors. Most people have two functioning kidneys, but one is all that is needed to live a normal life, according to the National Kidney Foundation, and when a kidney is removed, the remaining normal kidney compensates for the loss of the donated kidney.
Mount Sinai Hospital in Manhattan, with which the Sinis are working, is among the hospitals that participate in the National Kidney Registry’s "kidney swap" program through which kidney donors who are not a match for their intended recipient can be a match for someone else. The intended recipient can receive a kidney from another donor within the program.
Pam Sini actually had someone offer to give her a kidney. The donor was only an acquaintance of the Sinis, but told John Sini that after learning of his wife’s condition, she decided this was something she wanted to do. "She saw Pam and I with our grandchildren and she said ‘If I needed a kidney wouldn’t you want someone to donate it so I could spend more time with my grandchildren?’,’’ he said. The woman, unfortunately was disqualified as a donor.
According to the U.S. Department of Health and Human Services, the median wait time for a kidney donation is 1,219 days, or more than three years. Both of the Sini children –Heather and John Jr. – have offered to donate kidneys to the swap program. While their kidneys are not a match for their mother, the hope is that another kidney will be found for her through the program.
"So many people are waiting for kidneys. The swap program is making such a huge difference," Pam Sini said. "It’s like a chain reaction. I want to encourage everybody to consider donating an organ."
For more information on kidney donation, contact Mount Sinai Hospital at 212-659-8086 or www.mountsinai.org. For information on organ donation contact the New York Organ Donor Network at 646-291-4444 or www.donatelife.org.