Organ donation: an anniversary story
“Cumpleaños feliz, te deseamos a ti,” our family sang “Happy Birthday” to my wife, Adriana. “Cumpleaños felices,” we cheered, not the date of her birth, but rather the date she received a new liver. Adriana was born in April, but we also celebrate her birthday in November, thanks to a life-saving organ transplant operation. She suffered from polycystic liver disease, a rare condition that causes cysts (fluid-filled sacs) to grow throughout the liver.
Shortly after the birth of our first child in 2003, my wife’s aggressive form of the disease became even more severe, further deforming her organ. A healthy liver has a smooth appearance and weighs between three and three and a half pounds. Adriana’s polycystic liver resembling a bunch of large grapes weighed just over 20 pounds when removed.
The enlarged liver displaced his other organs, complicating his overall health; Adriana would surely die without a transplant. Her medical miracle happened in her native Colombia when doctors told us that an organ donor, a woman who sadly died in a car accident, was compatible with Adriana.
In general, about 75% of people who undergo liver transplants live at least five years, according to the Mayo Clinic. This means that for every 100 people who receive a liver transplant for any reason, approximately 75 will live for five years and 25 will die within five years. Adriana celebrated her 17th birthday with her new liver last November.
April is National Gift of Life Month. Doctors and advocates say it’s more important than ever to draw attention to the need for organ donors. Every 10 minutes or so another person is added to the national waiting list.
I became an organ donor shortly after Adriana’s liver transplant. Before that, I was like many Hispanic-Latinos, who are less likely to donate organs than Americans overall, according to organ donation experts. Hispanic-Latinos have a disproportionate need for donor organs and are less likely to consent to donation than their non-Hispanic counterparts, reports the National Library of Medicine.
“We transformed the way they thought and saw … organ transplantation,” said Dr. Juan Carlos Caicedo, organ transplant surgeon and director of the Hispanic Transplant Program at Northwestern Memorial Hospital in Chicago. In an interview on WTTW’s Latino Voices, Dr. Caicedo told me that his team of 50 healthcare professionals at Northwestern Medicine’s Hispanic Transplant Program helps break down language and cultural barriers in the Hispanic-Latino community. “To be able to do it in their own language – know their culture, because our team is bilingual and bicultural – and remove all language and cultural barriers, we were able to involve them in a positive way,” he said.
Last year, nephrologists at Loyola University Medical Center told Adriana that her kidneys, which suffer from polycystic kidney disease (PKD), were failing. PKD is another an inherited disorder in which clusters of cysts develop primarily in the kidneys, causing them to grow larger and lose function over time. As a result, Adriana is fast approaching the point where she will need dialysis.
I quickly volunteered to be tested to see if I could be a living donor for my wife.
Transplant patients are often reluctant to consider an organ from their spouse because the organs may not match blood and tissue type. A poor match can cause the recipient’s immune system to reject the organ.
But a report published in the journal Dialysis and Transplantation found that kidney transplantation from joint donors “has outcomes comparable to those of other unrelated living donors and shortens the time spent on the waiting list”.
Adriana is on that list, and the wait could be up to three years. Luckily, Adriana and I learned that I was a strong partner in donating my kidney to her. We will be operated in June.
There are over 100,000 people currently on the national transplant waiting list.
Current statistics show that Americans from minority groups make up nearly 60% of those waiting for organ transplants. Although a transplant can be successful regardless of the race or ethnicity of the donor and recipient, the recipient’s chances of longer-term survival are greater if the genetic backgrounds of the donor and recipient are closely related.
Please consider becoming an organ donor. Americans of all communities are needed to help make a difference that saves lives. People who register as organ donors can save up to eight lives and improve the lives of 75 others.
Some of these gifts may take place during your lifetime. For example, living donors can donate a lung, kidney, or part of their liver, which can grow back almost to its original size.
Next year my family is looking forward to adding another birthday in June for Adriana, celebrating her new kidney, the gift of life and the love of our family.
Hugo Balta is associate editor of the Chicago Reporter. He and Adriana celebrated 21 years of marriage in February. They reside in Chicago with their two children, Isabella and Esteban.