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Getting on the Transplant Waitlist: What to Expect

Having an organ transplant can be lifesaving, and quality of life building. For most individuals in need of transplant, their journey begins with getting on the waitlist. It's a process that may seem daunting, but knowing what to expect may alleviate some of the anxiety associated with this step.

The First Step

You may be referred to a transplant service if you are struggling with a degree of organ failure, or a disease, like diabetes or cirrhosis or cardiomyopathy, that can lead to organ failure. You may also ask your primary care provider or a specialist about transplant options and what benefits you might experience. For example, someone with type 1 diabetes might have their disease cured by transplanting both the kidney and the pancreas.

Many Lists - One Manager

There is a kidney waiting list by state; a heart transplant waiting list by state; etc. but not all states have a transplant center and all waiting lists are managed by one central organization, the United Network for Organ Sharing or UNOS. "UNOS takes any bias out of it," says Amber Jones, a U of U Health Transplant Services program nurse manager. "It becomes a calculation of who's sickest and who is the best fit for these organs, with heavy statistical modeling."

Evaluation and Decisions

Before you can be registered to a transplant waitlist, you must be evaluated. "We look at the patient from head to toe," says Jones. "We've got to make sure they're healthy enough to undergo a significant surgical procedure and maintain that organ afterwards." The team looks at your physical, mental, and financial preparedness, to help ensure a successful transplant and follow-up care. Some appointments can be done virtually. You'll also be asked to decide if you would accept an organ with health implications, a hepatitis positive liver for example, and a plan to treat the new issue post-transplant. "It's very important to our programs, not to miss opportunities for our patients," says Jones.

The Last Steps

The last step in the evaluation-after checking everything from family health history to insurance coverage and reviewing any new test results-is for the transplant team to see you in person. If you're traveling, you'll need one to two days on site to meet with transplant specialists and transplant surgeons. They work to understand your specific anatomy to plan for the best possible transplant outcome. Then the last step in the entire waitlist registration process is a committee meeting, made up of all the experts you've worked with along the way, at which the team decides if you're a viable transplant candidate. With an affirmative vote, you are then added to an organ transplant registry.

Your Place on the Waitlist

The national group UNOS works to ensure fair distribution of organs, matching them according to blood and tissue type; organ size; medical urgency; waiting time; and geographic location. It's a dynamic list that changes as patient conditions change, so it can be tough to gauge the expected wait time. Jones notes , for example, the kidney transplant waiting list in the Utah region can vary from two to four years, and that's often tied to the pancreas transplant waiting list to treat diabetes. The liver transplant waiting list, on the other hand, can be very fluid, days to years, depending on how sick the patient is, and if there are living donors available.

No matter the wait, Jones says it's always a good day when they get an organ offer. "That is one of the best things, to be able to say, 'it's your day to receive a new heart. It's your day to receive a new liver."