Every decision is critical with an organ transplant. Here’s what you need to know to get the best possible care.
Learning that you need an organ transplant can be terrifying. “I didn’t think I was going to live long enough to receive a new liver,” says transplant recipient Kandice Blythe. “Just three days before I [received mine], I was throwing up straight blood and put in the ICU for two days.”
Kandice isn’t alone. According to the United Network for Organ Sharing (UNOS), there were nearly 40,000 organ transplants in the United States in 2019 — an all-time high.
Blythe’s doctor, John A. Goss, M.D., is physician director of transplant services and performs transplant surgeries at Baylor St. Luke’s Medical. Dr. Goss thinks the transplant experience is probably overwhelming for most. “They’re told that they have a disease that’s life-threatening, that they are going to have an enormous operation, take medicines for the rest of their life, that they will have to have caregivers,” he notes. That can lead to information overload and can make the transplant process even more difficult for many. But Dr. Goss says there are a few basic things every transplant patient should know — or know to ask.
Go big
Perhaps most important is where your transplant program is located. “It’s important to go to a well-established program,” he says. “You want to get a transplant at a place that can offer all transplants. With that ability comes all the extra services, such as infectious disease, palliative care, nursing care, the anesthesiologist, the pathologist, the blood bank — everything.”
Baylor is strengthening the world’s best organ donation and transplant system.
Another key benefit of a large program is the ability to be offered, and accept, donated organs for transplantation. “The bigger centers are more aggressive with taking organs,” Dr. Goss says, “so the patients get transplanted faster.”
Choosing a program
But not everyone can travel to a large transplant center like Baylor St. Luke’s. “It’s not always feasible for everyone,” Dr. Goss says.
Many factors could limit a patient to the transplant centers in their area, but patients can still make their choice based on some basic facts. “The transplant center should be able to provide them with their patient care protocols, what to expect, what the criteria is going to be for acceptance, the level of aggressiveness in acquiring an organ, and how they’re going to take care of them afterward,” Dr. Goss says. “That should all be outlined for the patient.”
Patient education is key. Most larger transplant programs offer educational classes where patients are taught what to expect. “A patient should be leery of centers not providing that,” Dr. Goss notes. There are also resources online that can help; UNOS sponsors a site called Transplant Living that helps to educate patients.
Dr. Goss also urges patients to research the team’s qualifications, noting that liver transplant hepatologists, for example, should be certified in medicine, gastrointestinal medicine, and transplant hepatology. The surgeons performing the procedures should have completed an American Society of Transplant Surgery (ASTS)-approved fellowship. Transplant coordinators should ideally have the national certification in transplantation as well.
The donation of life
Dr. Goss stresses that none of this is possible without the true heroes of the process. “If you don’t have the donation, the whole process can’t happen,” he says simply. “Organ donors are the most important part of it.”
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For Kandice Blythe, faith was crucial. “Trust in all your doctors and nurses and everyone that will be there to help you,” she says. “Also, make sure you have family, friends, or a group of people that love and care for you and will support you no matter what happens — it makes a world of difference.”
Kandice is recovering well with her new liver. “I haven’t felt this good in a long time,” she says. “Dr. Goss did an excellent job on my surgery and I could not have had a better set of doctors and nurses. I am very thankful for him and the rest of the team that took care of me.”