Gift of Life
One person’s organ donation can save eight lives and improve the lives of 75 others
Organ donation saved the life of Sarah Ann Scantamburlo, and she’s been living it to the fullest ever since. “I have days when I am really tired but I work 50 hours a week. I have two kids in travel sports and I’m working on my doctorate at Wayne State University. I want to do research work with mental health stigma,” said Scantamburlo of Novi, who is among the organ donor recipients sharing their stories throughout April in observance of National Donate Life Month. “The general public doesn’t understand it and they perpetuate a lot of misinformation that hurts people.”
At present, there are more than 100,000 people in need of life-saving organ transplants, including about 3,000 Michiganders.
Each day, about 22 of them will die waiting. “These are mothers, fathers, siblings and grandparents,” said Taneisha Campbell, an organ donor recipient and community relations coordinator for
the Gift of Life Michigan, the federally designated organ procurement organization that has served the state for 50 years. “We all most likely know someone who needs or will need an organ transplant.”
Scantamburlo has had several.
She was diagnosed as a sixth-grader with patellar subluxation, a partial dislocation of the kneecap (patella) also known as patellar instability that required multiple reconstructive surgeries. While each operation was met with hope, none of them took. For years she suffered with arthritic knee pain until an intuitive doctor suggested she have a cadaver joint capsule replacement.
“After precise measurements were taken I was put on the list for a bone and tissue donation,” Scantamburlo said.
After three months of waiting for the perfect fit, she got a call to schedule her knee surgery on her son’s birthday and, shortly after, was given a new knee. This time she walked away from the hospital in no pain and to this day has remained active, even going so far as to play goalie during her son’s parent versus child hockey game. Knowing her gain was a family’s loss, Scantamburlo wrote a heartfelt letter to the family of her donor indicating her level
of gratitude and vowing to be a champion to the needs of others.
That was the first letter she wrote.
In high school, while still dealing with knee problems, she was diagnosed with a rare autoimmune disease. She was hospitalized and after a week of treatments was able to go home. She remained in remission until her first year of college and her kidneys began to fail.
“I was tired, napping all the time, and I didn’t feel I was academically competitive with my peers,” Scantamburlo said.
Despite being very sick, she managed to finish her semester of school. But upon returning home, she was told that she was suffering from kidney failure or end-stage renal disease (ESRD) and would need dialysis or a transplant immediately.
Many people on dialysis are also on the national organ transplant list operated by the United Network for Organ Sharing (UNOS), but it is a waiting list. UNOS is a private, nonprofit organization contracted by the federal government to manage the nation’s organ transplant system and waiting list.
UNOS works with donation and transplant professionals to make life-saving organ transplants possible using a complex process that involves all organ procurement organizations (including Gift of Life Michigan) and hospital transplant centers (nine programs in Michigan).
When prioritizing patients for transplantation, medical factors, size of the organ and distance from the donor hospital are considered in the matching process for all organs. Geography is especially important for organs such as hearts and lungs, which have less time to be transplanted.
But she couldn’t wait and so, her best chance at surviving was a living organ donation.
Living donors
Most organ and tissue donations are given after a person has died. But there are some organs and tissues that can be donated while the donor is alive, such as the kidney.
According to the U.S. Department of Health and Human Services’ Health Resources and Services Administration’s Healthcare Systems Bureau (HSB) nearly 6,000 living donations take place each year. That’s about 4 out of every 10 donations.
In most cases it is a family
member such as a parent or child that makes a living donation, sometimes even a close friend. Some people become altruistic living donors by choosing to donate to someone they don’t know.
Once the family knew of her condition, many offered to be tested as donors including her parents, Robert and Gail Giza of South Lyon. Both of them were a match but it was her mother who became the donor. “She was adamant that it would be her doing it,” Scantamburlo said.
The surgery was successful but her body rejected the kidney and eventually she had to undergo two more transplants, the second from her sister and a third from a deceased donor.
Saving lives
National Donate Life Month is the perfect time to honor the stories of donors and recipients like Scantamburlo, but it’s also meant to raise awareness of the importance of registering as an organ, cornea and tissue donor and educate people about the process.
Between her years of suffering and praying for each transplant to work, Scantamburlo managed to earn a master’s degree in social work and mental health science and marry the love of her life, Brian Scantamburlo. She also worked for five years as a dialysis social worker, which gave her a chance to help others suffering from the same illness.
Three years ago, when the hospital called to say they had a kidney, she and Brian, along with their two sons, Paolo, 6, and Gianluca, 9, went to the hospital together.
“They didn’t understand the gravity of the situation but I didn’t want them to be excluded,” Scantamburlo said.
Once they’re older she will tell them more about what happened to her and why she remains grateful.
“I take a lot of pictures, not just to assist my memory but also to leave a legacy of stories for my children,” she said. “Life is short and life can provide unexpected twists. I want my children to be able to look back and recount fond moments we all spent together.”
One of the realities of organ donation that’s not easily conveyed is the gratitude that recipients have for their donor families. “I’m happy I’m alive and that I have this kidney. But I also know there’s a family out there who lost a loved one and who gave her organ to me. It’s a lot of emotional responsibility. Even with a living donation there’s the guilt of knowing this person gave up something.”
It’s this gratitude that Scantamburlo tried to convey in her second letter to a donor family.
“I want them to know that because of their selfless gift of organ donation I have been able to pay it forward,” said Scantamburlo, who works as a psychiatric physician assistant at a community mental health agency. In doing so, she not only helps patients in southeastern Michigan but works with her agency to give public education talks and forums about mental health, and whenever possible enlightens people about the importance of organ donation.
“We need to talk about organ donation to make it more mainstream. People need to understand on the saddest day of a family’s life this is the most incredible gift that you can give.”
People who have a chronic illness face barriers their entire life but once they receive an organ donation everything changes and a whole new life is made possible.
“It’s an amazing windfall opportunity,” Scantamburlo said.
Waiting lists
On average, someone is added to the waiting list every 10 minutes in the United States, and as many as 22 people die each day because an organ was unavailable, according to the Gift of Life Michigan.
Last year, 1,047 organs were transplanted in Michigan.
So far this year, the generosity of Michiganders has led to 268 transplants and saved numerous lives.
As of April the number of people waiting for transplants include 2,059 for a kidney, 217 for a liver, 129 for a heart, 46, a lung, 33 a kidney/pancreas, 23, for kidney/liver; 15 for a pancreas, 4 for kidney/heart and 3 are in need of a pancreas/liver/intestine transplant.
Dorrie Dils, CEO of Gift of Life, said the organization has seen a steady increase in donations during the past several years, but more needs to be done.
“I’m extremely proud of the work we’ve done and the number of lives we’ve saved,” she said. “The need for registered donors is critical, and we will continue to collaborate with our hospital and transplant
center partners to work toward the day where nobody dies waiting for a life-saving gift.”
Transplanting lives
When an organ does become available, is it Dr. Miguel West of Ann Arbor and a transplant surgeon for Gift of Life who is called upon day or night, during his 20-day/24-hour shift.
“I’m on call right now,” said West, who has been working in the field of transplant medicine since 1995 and at 64 is not planning to retire any time soon. If it’s a local call, he will meet his driver at Gift of Life Michigan and then head to the hospital to procure the organ. If it’s outside of southeastern Michigan, such as Traverse City or Grand Rapids, he will head to Willow Run Airport and fly to the hospital for the recovery of the organ donation.
Once he arrives, it is his responsibility to remove the organ and ensure that it is in the best possible condition before transporting it to another hospital where another doctor is waiting to perform the transplant surgery.
“It has to be done the right way. You have to treat it like it’s going to your mother, your father or your sister,” said West, who has been a transplant surgeon since 1995 and spends a great deal of his off-duty hours talking to people about the importance of organ donation including elementary and high school students.
“When they hear about organ donation in school they often bring the conversation home and that means a family discussion, which is important,” West said.
If more families had this conversation it’s likely that more of them would know about the misconceptions associated with organ donation.
Debunking the myths
One of the biggest misconceptions that people have is that doctors won’t try as hard to save your life if they know you’re an organ donor.
“No one looks at a patient’s wallet to see if they are an organ donor,” Scantamburlo said. “I know that having worked in the field.”
West concurred.
“I do not get a call until the patient is deceased. I have no involvement at all,” West said.
Here are a few more facts, courtesy of the HRSA:
Myth: I have a medical
condition, so I can’t be a donor.
Fact: Anyone, regardless of age or medical history, can sign up to be a donor. The transplant team will determine at an individual’s time of death whether donation is possible. Even with an illness, you may be able to donate your organs or tissues.
Myth: I’m too old to be a donor.
Fact: There’s no age limit to organ donation. To date, the oldest donor in the U.S. was age 93. What matters is the health and condition of your organs when you die.
Myth: I don’t think my religion supports donation.
Fact: Most major religions in the United States support organ donation and consider donation as the final act of love and generosity toward others.
Myth: If they see I’m a donor at the hospital, they won’t try to save my life.
Fact: When you are sick or injured and admitted to a hospital, the one and only priority is to save your life, period. Donation doesn’t become a possibility until all lifesaving methods have failed.
Myth: Rich or famous people on the waiting list get organs faster.
Fact: A national computer system matches donated organs to recipients.
The factors used in matching include blood type, time spent waiting, other important medical information, how sick the person is, and geographic location. Race, income, and celebrity are never considered.
Myth: My family won’t be able to have an open casket funeral if I’m a donor.
Fact: An open casket funeral is usually possible for organ, eye, and tissue donors. Through the entire donation process, the body is treated with care, respect, and dignity.
Myth: My family will have to pay for the donation.
Fact: There is no cost to donors or their families for organ or tissue donation.
Myth: Somebody could take my organs and sell them.
Fact: Federal law prohibits buying and selling organs in the U.S. Violators can be punished with prison sentences and fines.
“I love my job because I get to help so many people but so many more could be saved,” West said.