Story by Kathleen Wilson
“Hello Judith. I’m your donor’s mother.”
Judith Green nearly fell off her chair the day she received that phone call and that day will remain indelible in her memory. The two have become close friends as the result of a family’s lifesaving donation.
Judith was diagnosed with an auto-immune disease 27 years ago which affected her liver and her health quickly deteriorated. Judith had two days to live when a liver became available. Even though Judith has never needed another organ, she continues to try to educate others about the importance of becoming an organ donor.
The numbers change daily, but at the time of this writing, the United Network for Organ Sharing (www.unos.org) lists the names of 114,709 men, women, and children waiting for a lifesaving organ transplant.
Judith Green, transplant recipient, and Kathleen Georgalas, Event Coordinator at the Albert Wisner Public Library, hosted an informative event on organ donation at the Library on Wed., Oct., 17, to provide information about organ donation with several organ recipients in attendance.
Keynote speaker, Dr. David Wolf, Medical Director of Liver Transplantation, Professor of Clinical Medicine, Gastroenterology and Hepatobiliary Disease, said the first successful organ transplant was in 1954. The successful surgery was performed on a 23-year old who was suffering from kidney disease with no cure. During the 1960s, the first liver transplants were performed and in 1984, the first simultaneous heart and lung transplantation was performed.
Dr. Wolf cited that we’ve all heard about inequities in organ donating and while some people need transplants through lifestyle and some through no fault of their own, obtaining a donation is always difficult.
“What do South Dakota and Washington, D.C. have in common? Absolutely nothing,” stated Dr. Wolf, but in these two state, when a family loses a family member through a catastrophic neurological event, they donate their organs for organ transplant 90% of the time.
“The Empire State is a great state, but we rank 50 out of 50 for registered organ donors. I talk to everyone about organ donation. Believe me, if I’m in a cab in NYC and my cab ride is long enough, I talk about it. I don’t know if we can change things and I’m not sure if a bumper sticker works, but I guess it’s a start,” said Dr. Wolf.
“Don’t take your organs to heaven; heaven knows we need them here,” reads one such bumper sticker. It was heaven on earth for the many organ recipients who told their stories that night.
Organ Recipients Share Their Stories
Kelly Kizyzak has been a registered organ donor since she can remember. On Feb. 15, 2015, while sitting at home, Kelly had three heart attacks in one night. She was 45 years old and had no symptoms, no family history of heart attacks, and never smoked.
Orange Regional Hospital inserted an Impella Heart Pump and airlifted her to Westchester Medical Center in Valhalla, NY where she received a Left Ventricular Assist Device (LVAD), used on patients with end stage heart failure. The device serves as a bridge for patients waiting for a heart transplant.
Even though Kelly was in a coma, she was immediately put on the waiting list for a heart. As a registered organ donor, she never dreamt she would become the one waiting for an organ.
Her husband and teenage children endured the thirteen-month wait with her for the life-saving organ. Today, Kelly is thriving and healthy with the gift of the organ she received on March 12, 2016, and while she doesn’t know who her donor was, she remains indebted and grateful to her donor for the gift of life.
Janelle Stiglic, however, met the family of the donor who gave her both a kidney and a pancreas. “How do you say, ‘Thank you’ when someone’s family member has passed,” remarked Janelle. “I wrote a letter to the family to express my gratitude for giving me life,” while Janelle expressed there were just no words for their gift.
Janelle bought her first home in 2009 and had just moved in.
“I had workers here laying carpet and got the phone call confirming polycystic kidney disease and I also had spontaneous diabetes and was on insulin,” said Janelle. “I learned that Columbia Presbyterian had a trial program that included both kidney and pancreas transplantation and I began testing in 2009, and in 2011 I received my transplants. No one knows what it’s like waiting for that phone call. I volunteer with Donate Life of Orange County and at every event I post a sign that reads, ‘Go ahead, ask me.’”
She noted that young adults are the first to sign up as registered organ donors. Janelle hopes this new generation can make a difference in the number of registered donors, especially in New York State, which is in dire need of organs.
Man Donates Kidney to His Brother
Guy Pfeifer wasn’t a registered donor, but when his 43-year old brother needed a kidney, all the brothers (three of them) and their wives underwent the testing to see if they would be a match. Guy was the best match and became a living donor.
About a year later, the donated kidney began to fail and the next brother in line donated his kidney. Guy noted that of the more than 100,000 people waiting for an organ, about 90,000 of those are hoping for a kidney.
In New York, the average wait for a kidney is approximately seven years. Guy and his family, along with his brothers and their families, all try to encourage people to become registered donors.
In Guy’s closing remarks he told the audience, “As a living donor, I felt that left room for another patient to receive a kidney and that incredible gift of life.”
EMT Volunteer Receives Life Saving Gift
Geoff Stafford was yet another organ recipient who spoke and told us about his work as an EMT Volunteer for the Greenville Ambulance in the 90s.
“Back then, no one used gloves or anything,” Geoff said.
Geoff often donated blood and one day in 1995, he received a call from the blood bank informing him that he had Hepatitis C.
“Eventually, Hep C destroyed my liver and it was failing. My MELD (Model for End stage Liver Disease) needed to be 30 to qualify for an organ transplant in NY,” said Geoff.
It was Aug. 1, 2006, 11 years after the phone call from the blood bank, and Geoff was feeling very ill. He drove himself to the hospital where his blood pressure read 55/35 and he barely had a pulse. He was hospitalized, immediately receiving transfusions and was in an ICU unit for about a month. He said at that point he was so weakened from the Hepatitis C that he was sleeping about 22 hours a day.
Through an unfortunate boating accident, a liver became available. Geoff got the call and was informed that two people were in front of him. It was Labor Day weekend and Tax Amnesty weekend for shoppers. Traffic was a mess and time was of the essence! His friend drove down the median and got to backroads and they made it to Columbia Presbyterian in time for Geoff to receive the lifesaving gift.
He walked back and forth in his hospital room a mere hours after surgery and, in the days that followed, walked around the rectangle edge of the transplant unit counting the 1,340 tiles countless times, noting there were various kinds of transplant patients counting the same tiles.
Geoff noticed the plush terry robes they wore with the “heart” monogram emblazoned on each. The heart transplant program received many more donations, which allowed for the many “extras” such as these robes, given to patients. While the liver unit didn’t have these items, Geoff made sure he visited the heart unit and started bringing robes and pajamas to his fellow patients!
Gary Southard said he too counted those tiles at Columbia Presbyterian. Gary was diagnosed with congestive heart disease in 2003. Gary said he had a tough three year wait for the organ and, speaking in a heartfelt voice, said, “I would do whatever I can to help others. I made the decision to become a registered donor before I received my heart.”
Former O.C. Executive Shares His Story
Ed Diana worked as County Executive, owned a restaurant, and was a teacher. Life was good until one day in 2002 when he learned he had liver disease. Shocked, Ed learned there can be numerous causes including Hepatitis C, too much fat in the liver, genetic links, or some other unknown cause.
Thinking he had a good diet, exercised, and drank only socially and occasionally, Ed was shocked at his diagnosis. Then he was informed that he wasn’t sick enough to qualify for a new liver because his MELD score wasn’t high enough. In NY a patient’s MELD score needs to be 30 to qualify for a transplant. Eventually, Ed and his family sought an organ in Tennessee where the number of registered donors is much higher and consequently, a MELD score of 28 qualifies for an organ.
On the eve before their flight out of Newark to Tennessee, Ed received a call just before midnight. They made it to Columbia shortly after 2 a.m., where Ed received his life saving gift.
Steve Carras’s cousin lived in Tucson, AZ and received a liver transplant 12 years ago and a kidney one year ago. Since his cousin lives alone, she had to have people lined up who could assist her post surgery.
Steve’s sister immediately flew to Tucson and was there when her cousin woke up and in the days that followed. Later, their cousin experienced a rejection event and was in a rehabilitation center for about two months.
Steve was there with her in Tucson last week and experienced first-hand what it’s like to prepare fresh vegetables and sanitize them to prepare a meal. Interactions with medical professionals, organ recipients, ADHC (Advanced Directive Healthcare), and the like filled his every day.
“I want to stress the importance of caregivers. It wasn’t until spending time with an organ transplant recipient that I had the designation of ‘Organ Donor’ on my NY Drivers License,” said Steve.
Woman Receives Double Lung Transplant
Double lung transplant recipient, Ellen Dunn, showed signs of shortness of breath and within a year was told that she had Pulmonary Fibrosis. With both lungs hard as rocks, Ellen desperately needed a double lung transplant.
Today, Ellen is the coordinator of the Donate Life Group of Orange County and volunteers as an advocate for LiveOnNY. Ellen’s double lung transplant in 2008 saved her life and since that time she has been passionate about raising the awareness of organ donation.
Ellen said, “If you learned you needed an organ to save your life, would you be willing to accept one from a donor?”
New York ranks last in the nation in the percentage of residents registered as organ donors. Even though the speakers and numerous attendees at this event have all received the selfless and life-saving gifts of organs, they are passionate about educating and informing others about the importance of organ donation because without it none of them would have received a second chance.
Organ Donor Information: www.UNOS.org United Network for Organ Sharing; www.LiveOnNY.org Live On NY; www.donatelifegroupoc.org Donate Life Group of Orange County; www.UMPC.com/LivingDonorChampion Living Donor Champion Program; www.organdonor.gov U.S. Government Information on Organ Donation and Transplantation; https://dmv.ny.gov/forms/mvod.pdf What you Should Know About Becoming an Organ Donor.