I was over-the-moon happy for Roth. He’s not only alive — he’s a recipient of and witness to sheer human kindness. Organs are limited resources, as are the donors — living and deceased — who are willing to share them.
I also have a donor to thank.
I had days before I would likely go into a coma and die.
But surgeons, social workers and administrators sprang into action. Over the next few days, they came across a liver from a young man who was the best match in terms of organ size, blood type and other factors.
The window to transplant his liver was eight to 12 hours after his death. Thankfully, he had expressed that he wanted to be a donor, or his family had made that decision. After many conversations, tests and a nearly eight-hour operation, my life changed forever.
Timing is everything
How would I say thank you? An organ isn’t just any gift. And there’s no guarantee it will function properly.
I don’t have much personal information about my donor — only his medical issues, age and nationality. I’d like to connect with his family one day, but for now I’m just hoping that the thank-you letter I sent via my organ procurement organization — which manages local organ recovery efforts — is well received.
I am also grateful to my medical team. I’m alive in a time when transplants are common and often successful. A great-aunt died of liver failure in 1959, just a few years before procedures to replace such organs were possible. She was only 49. The first successful human liver transplant was performed in 1963, but it wasn’t until 1967 that a liver transplant patient lived more than a year.
Now survival rates are higher, and recipients on average live much longer. There are protocols to determine who can give and receive organs, but need has historically outpaced availability.
I worry that Black, Latino and low-income patients are less likely to receive organ transplants than White and higher-income patients. They’re also less likely to be donors. The reasons why include historic mistrust of the health care system.
I wanted to know what’s preventing people in vulnerable communities from getting transplants and what’s being done to fix the problem.
I wanted my experience with the transplant system to be the norm, not feel like a miracle.
Organ donations could be higher
Most donors don’t look like me
Some ethnic minorities, such as Korean, Samoan and Tongan Americans, have an especially hard time finding organs, he said.
Even though people of different races do match each other, members of the same ethnic group tend to be compatible in terms of tissue, blood type and other biological factors. Good donor-recipient matches lead to better results for the patient and the transplant system itself. When more people from different racial backgrounds register to donate, chances go up that more transplant candidates will find an organ when they need it.
The most sought-after organ
“White people are more likely to get transplanted than Black people. By far, the most common organ to be listed for is (the) kidney, and that’s also the only organ with majority non-White people getting listed,” said Allan B. Massie, professor and director of NYU’s Center for Surgical and Transplant Applied Research Qualitative Core, via email.
Getting on the list
The biggest problem is “getting to the transplant list,” said Dr. Jerry McCauley, incoming president of the United Network for Organ Sharing and medical director of transplantation services at Thomas Jefferson University, and not getting on it can be an obstacle to transplant equity.
“Black people on dialysis are less likely to get wait-listed for kidney transplantation than White people on dialysis,” Massie said via email.
Caplan said inequities in general health and access to health care — issues linked to socioeconomic status and a history of discrimination — also affect who gets an organ and even who ends up needing one in the first place.
“Poor minorities — Native Americans on the reservation, poor people in inner-city Brooklyn, probably poor Hispanics in like Corpus Christi, Texas … a lot of undocumented people,” Caplan said, “they will need transplants more because obesity rates are higher, high blood pressure is not controlled and (they’ve) got more diabetes.”
There’s also another culprit, according to Dr. Juan Carlos Caicedo, founder and director of the Hispanic Transplant Program at Northwestern University: Most US transplant centers have not implemented a multicultural or multilingual approach to care.
“Only 10% of those programs have a website translating different languages besides English,” he said.
Caicedo’s research indicates that centers incorporating multiple languages and culturally sensitive care are successful in getting more Hispanic patients to be living donors.
“Patients who are White have the highest chances of finding a fully matched donor. That’s 79%. The community with the lowest chances of matching are the Black and African American communities at 29%,” said Yolangco, adding that Asian and Pacific Islanders have a 47% chance of finding a match, Hispanics or Latinos 48% and Native Americans 60%.
It’s unfortunate, Caplan said, the need for transplants among certain groups exceeds the number of available organs; it affects patients’ ability to find good matches, but it’s unfair when language, class and race also limit access to transplant care, he said.
Embracing a 2nd chance
The point of the transplant system is to keep more people alive and healthy — which includes Black women such as myself as well as low-wage earners and those who don’t speak English as a native language.
My new liver has given me a second chance, one that comes with more doctors’ appointments and more fear of the unpredictability of life. But there’s also a commitment to raising awareness for organ donations among people of color as well as a lot more love for organ donors, especially the man who saved my life.