by Alysia Tacinelli
As people begin to consider end-of-life planning, they often reflect on what type of legacy they will be leaving behind. Discussions about heirlooms and what’s going to be gifted to family members and charities often feature prominently. But what about gifting life?
Making the decision to become an organ donor is a deeply personal one—one that could provide immeasurable lifesaving benefits. Whether donating organs to those in desperate need or donating a whole body to the advancement of medical research, the donor’s gift is a way to give death meaning and to keep the memory of his or her life alive.
One Life Touches Many
Gina Kosla was 18 years old and attending Coastal Carolina College when she started experiencing shortness of breath. A cystic fibrosis sufferer, she had contracted pneumonia. Her family made a decision to fly her to Duke Medical Center in Raleigh, North Carolina.
Thankfully, Gina only had to wait six days to receive a double lung transplant. “We felt elated. In the same thought, there is someone out there who may be passing this world,” said Reyna Kosla, Gina’s mother, when describing the moment they found out an organ was available. “There is also a family and friends grieving. Whoever the donor may be at whatever time God designates this to happen, we all must think of the donor too.”
Gina’s new lungs came from Jillian Koch, a healthy 14-year-old girl, who was dreaming of moving to San Francisco to become a sculptor, when a sinus infection traveled to her brain causing a fatal subdural empyema. Deanne, her mother, describes the reason behind donating her daughter’s organs: “I needed my daughter’s life, no matter how short, to have meaning. But most of all, I wanted a part of her to live on. I simply would not accept that this was all there was, and I refused to let Jillian’s story end there. I never realized the profound impact our decision would have. It has changed my life forever.”
Jillian’s organs were also able to save a man who had been waiting two years for a left kidney and pancreas, a mother of two from New York with her right kidney, and a woman who had less than 24 hours to live with her liver. Jillian’s largest donation, her skin, will better the lives of dozens of people, such as burn victims and babies born with serious physical abnormalities.
People who decide to become organ donors can save up to 12 lives—if the hands, face, and corneas are donated—and those who choose to donate tissue can help improve the lives of up to 50 people, according to the U.S. Department of Health and Human Services.
The department also states that another person is added to the national transplant waiting list every 10 minutes and, as of January 2019, the total number of hopeful organ recipients was 113,000. This number is surprising since 95 percent of U.S. adults support organ donation. Unfortunately, only 58 percent of Americans are actually registered as donors.
The disparity between those who support organ donation and those who donate could be partially attributed to lack of communication. Whether donating intentions are included in a will or through a discussion with family members, it’s important to make your intentions clear ahead of time.
Those wanting to sign up as donors can go to organdonor.gov to register. If you live in a state that offers the option to become an organ donor on your driver’s license, you can always be added to the registry through the selection of the donor option.
Living Donors Gift Second Chances
Dr. Denise Laurienti is a nephrologist in Winston-Salem, North Carolina. She specializes in kidney care and the treatment of kidney diseases. She is also a kidney donor. In January of 2018, Laurienti donated one of her kidneys to her sister, Sarah Queen, who has been battling lupus since she was 7 years old.
“Ironically, I am a practicing nephrologist,” says Laurienti. “So, I see patients needing kidney transplants every day. I am frequently encouraging patients to ask family members or friends to be donors for them. I really can’t imagine how hard that would be to have to ask your loved ones. I really didn’t want my sister to ever have to ask people. I was so happy that I was a perfect match and that she didn’t have to do that.”
According to the American Kidney Fund, the average wait time for a kidney from the national deceased donor wait list is five years. Nearly 100,000 people are on the waiting list for a kidney transplant. Many more are waiting for a kidney than for all other organs combined.
A year after Laurienti’s and Queen’s surgeries, they’re both doing great. Laurienti said of her sister, “She has been skiing twice in the past year and really has had no issues. Every now and then, I have to be sure she is getting labs checked. She feels so good I think she forgot she had a kidney transplant.”
Through Laurienti’s selfless gift, she’s improved her sister’s quality of life, and now they both have the opportunity to create more memories together, as a family, for years to come.
Donating to Research Creates an Impactful Legacy
Consider how many lives could be saved if more people included whole-body donation with their end-of-life planning. Perhaps the most selfless way to leave a legacy of purpose is to donate with the aim of establishing cures and understanding.
Whole-body donation is predominately used for teaching medical students, but, in other cases, donations can help educate forensic teams on how bodies decompose, aid in the discovery of new treatments and surgical approaches, and assist in the testing of new medical devices.
These programs depend on the altruistic nature of donors to advance the medical field. According to Katrina Hernandez, vice president of donor services for Science Care, which serves as a link between donors and medical researchers, “Each donor brings a project one step closer to its goal.” Doctors and scientists wouldn’t be able to progress their understanding of diseases and discovery of treatments without whole-body donors.
Science Care is one of several organizations helping to facilitate the donating process. Each donor who goes through the organization contributes to six research projects, such as testing for earlier detection of Alzheimer’s disease, research into the latest drug therapies, and surgical training for physicians learning to perform lumpectomies and mastectomies for breast cancer.
Perhaps surprisingly, it’s easy to register to donate your body to Science Care or similar organizations. The only age restriction is that the potential donor must be 18 to join the registry. If the donor is still alive, he or she can complete a form, found online at sciencecare.com, and if the person has already passed, family members can call 800.417.3747 to register and go through a short medical screening that determines if there is a match with an ongoing research project.
Once a body has been accepted, Science Care covers all the costs, including transportation, cremation, and the filing of the death certificate.
The U.S. doesn’t have a centralized agency for whole-body donations. However, the American Association of Anatomists has come up with a policy for how bodies should be handled when they’re donated. States vary in how they accept applications for whole-body donation and where a body is gifted. In some states, such as Nebraska, donors can determine which medical institution they’d like to go to. Unlike organ donation, the age of the donor doesn’t matter, and someone can pledge to be a donor at any point during his or her life.
Whole-body donation is a socially responsible way to leave behind a substantial legacy. Not only is a donor providing a vessel to save lives, but he or she is also giving hope to future generations. Hope that doctors and scientists will discover cures for diseases such as Alzheimer’s, blindness, or even cancer. Hope that doctors will learn new surgical procedures that will help improve the future for us all.