Wait is long for organ transplantsChristine Pizutti • For the Poughkeepsie Journal • July 25, 2010
Mariellen Magistro-Lodato has read every magazine at her doctors' offices, and has even started leaving her own reading material for other waiting room visitors.
Waiting for a kidney since 2007, her life has revolved around medical visits and her full-time job as a mortgage originator at Walden Savings Bank. She usually goes by Mariellen Lodato, but she's hoping someone will recognize her maiden name and offer a kidney.
"I'm supposedly the next one on all of these lists, but that's been since October of last year," she said.
She's had a few chances for a donor, but they've all fallen through. Last year, Albany Medical Center called with a potential donor, but it didn't work out. She's hopeful every day for another call.
When her symptoms first manifested, doctors found she had uncontrollable high blood pressure. She went in for blood tests, and didn't have Lyme disease.
About a year later, Lodato's joints were sore, she was tired, and her eyelids were puffy. She returned to the doctor, who suggested a complete blood test. The results prompted them to refer her to a nephrologist, who did a biopsy.
Doctors found the arteries to her kidneys were too narrow. They had been that way for so long doctors couldn't insert stents to alleviate the pressure. She had surgery to insert a two-foot hose in her stomach through her belly button so she could hook up to a dialysis machine at her home in Wallkill.
Now she undergoes a series oftreatments, from oral medication to dialysis for eight and a half hours, seven days a week.
Until she receives a kidney, or until her dialysis stops working, Lodato will be ill — often with feelings of achiness, severe lethargy and pain from water retention
"It's like anything else. I can die from it. It is a fatal disease," she said. "But everyone's gonna die. I don't know when that's (going to) happen to me, and nobody else knows either."
According to the National Kidney Foundation, there are more than a million U.S. patients awaiting organ transplants, with 18 people on that list dying each day and another 4,000 added each month.
Lodato believes the lack of available donors stems from a lack of education.
Julia Rivera, director of communications for the New York Organ Donor Network, said the biggest challenge in organ procurement is that people don't know they can enroll in the New York State Donate Life Registry online. The system has also been known to be cumbersome, requiring those interested to print out a sheet online, fill it out and send it in.
But that will change now Gov. David Paterson recently signed into legislation the Electronic Signature Act, enabling the public to commit to the online donor registry with an electronic signature.
"Anybody's eligible," Rivera said. "And nobody should rule themselves out of being a donor."
There are some diseases, such as HIV and cancer, that make a prospective donor ineligible, but that is determined through an extensive screening process under the United Network for Organ Sharing to make sure organs and blood are suitable for transplantation and transfusion. There are about 58 organ procurement organizations in the United States, with four in New York, and the Organ Donor Network being the second largest.
The reason for the online registry is that loved ones often don't discuss donations. Rivera said that because of this, families will opt out — only to sometimes find a donor card weeks later.
"Can you imagine the guilt the family feels? They want to honor the wishes of the loved one. That's the culture we live in — to ensure your wishes are honored," she said.
She said the largest number of people on the registry on the national and local level are those in need of kidney transplants, with more than 82,000 on the list in November 2009, according to the National Kidney Foundation.
"About 60,000 people die every year in our service area, and only 1 to 1.5 percent (of eligible people) are organ donors," she said. "Sometimes it's fear. Some people just don't know and don't understand."
She said right now, only about 13 percent of eligible drivers over 18 are enrolled on their license, which brings New York to the bottom compared to other states, she said. According to a press released from the office of Assembly Health Committee Chair Richard Gottfried, who sponsored the Electronic SignatureAct, New York ranks 47 — one of the worst rates of organ donation nationwide.
Assemblyman Richard Brodsky, D-Greenburgh (Westchester County), a candidate for state attorney general whose daughter is a two-time kidney transplant recipient, co-sponsored the electronic signature legislation. He also proposed donor legislation that "presumes consent" on the part of the donor, unless they had indicated otherwise.
Transplant survival rates are typically very high, and transplants are considered routine surgery, she said. As long as patients recover well and continue with immunosuppressant drugs, they should be able to live a long time with their new organs.
According to the state Department of Health, the donated organs of one person can save up to eight lives.
The story ended happily for Elizabeth Russell who is in her 15th year with a new liver. Russell suffered from primary biliary cirrhosis, which blocks the flow of bile, damaging liver cells. She was told by a physician that she would need a transplant some time in her life, and her liver grew progressively worse, particularly after the death of her husband in 1994.
In January 1995, doctors had Russell undergo a series of medical and psychological exams before being added to the list.
She was working as an ambulatory surgery nurse at Saint Francis Hospital at the time. She's retired now, but still does per diem work in the recovery unit.
"They called me at 2 a.m. on a Sunday morning, and the odd thing, was I was on call for the hospital working in the recovery room, and I thought the hospital was calling me to come into work," Russell recalled. "But they said it was Mount Sinai(Medical Center) and I had to be down there by 6 in the morning, and after that, it was all done."
Russell was out of the hospital in 10 days.
At the time, staff didn't tell recipients about their donors, so Russell wrote a note to the family through the hospital.
"I probably did better than most people," she said, regarding her recovery. "Some of the people there had been there for months."
She'll have to take anti-rejection medication for the rest of her life, which now includes spending time with her four grandchildren and great-grandchild. The transplant not only extended Russell's life, it also improved it. Russell said she's able to do any activity she wants because she's not bound by previous limitations.
"I'm here because of somebody else's generosity, really, and I really probably would not have been here — it's quite likely," she said. "By the end of September, I will have been working 50 years as a nurse. It's marvelous that I've gotten this gift, and will keep working as long as I feel I'm able to."
While the thought of being a living organ donor may sound too painful to consider, Vaughn Balbach's story suggests otherwise. Balbach, who knows Lodato from church, is in her third year living with only one kidney after donating her left one to a man at the church in 2007.
Years ago, Balbach was the only person in the room while her former mother-in-law died of kidney failure. When an announcement came in church that a man needed a kidney, she felt called to help.
"It was like God tapped me on the shoulder and said, 'this is you. You can do this,' " she said. "It was the strongest urge I've ever had."
She said testing began around the end of March, and the surgery was in August. That morning, she and her husband met the man and his wife at the hospital at 5 a.m. Balbach was in recovery by 12:30 p.m., and remembers being in pain for about a half hour. Pain medications dealt with the rest.
"I had almost no discomfort," she said. "It was easier than childbirth."
Now, she has three tiny incision marks that are barely visible — but the change in the recipient's life is much more obvious.
"My kidney has seen the world, and since the donation he's been free of dialysis," she said. "Since then, he's done very, very well. He took a road trip across country in an RV with his family. He's been to Hawaii, and it gives me pleasure to watch that."
Vaughn Balbach, who knows Mariellen Magistro-Lodato from church, is on her third year living with only one kidney after donating her left kidney to a man at the church in 2007.
Years ago, Balbach was the only one in the room while her former mother-in-law died of kidney failure. Then came an announcement in church that a man needed a kidney.
"It was like God tapped me on the shoulder and said, 'this is you. You can do this,' " she said. "It was the strongest urge I've ever had."
She said the testing process started at the end of March/beginning of April, and the surgery was in August. That morning, she and her husband met the man and his wife at the hospital at 5 a.m.
Balbach was in recovery by 12:30 p.m., and remembers being in pain for about a half hours. Pain meds dealt with the rest.
"I had almost no discomfort," she said. "It was easier than childbirth."
Now, she has three tiny incision marks that are barely visible — but the change in the recipient's life is quite different.
"My kidney has seen the world, and since the donation he's been free of dialysis," she said. "Since then, he's done very, very well. He took a road trip across country in an RV with his family. He's been to Hawaii, and it gives me pleasure to watch that."
http://www.poughkeepsiejournal.com/article/20100725/NEWS06/7250321/Wait-is-long-for-organ-transplants
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