Liver Transplant Caregiver Requirements

Why transplant centers ask for a caregiver plan

If someone you love is being evaluated for a liver transplant, the team will almost certainly ask a question that surprises many families: who will be the caregiver? For many centers, a solid caregiver plan is one of the things that must be in place before a patient can be added to the liver transplant waiting list.

This is not a test of how much you love the patient. It is part of the psychosocial evaluation, the piece of the transplant workup that looks at support, finances, mental health and the ability to follow a care plan. The national evaluation guideline from the American Association for the Study of Liver Diseases (AASLD) and the American Society of Transplantation says candidates should have enough social and caregiver support to get the help they need, both while waitlisted and until they can function on their own after surgery. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) says the transplant team looks for a good support system of family or friends before and after the transplant, and checks that the patient or caregivers can understand and follow the doctor's instructions.

The reason is practical. After a liver transplant, the patient takes powerful medicines on a strict schedule and needs someone watching for early signs of trouble. Before transplant, many patients with advanced liver disease can't safely drive, and some have confusion from hepatic encephalopathy. A review in Hepatology Communications estimated that a typical patient with cirrhosis needs about 9 hours a week of unpaid help from family and friends, before transplant even happens.

For the medical side of who qualifies, see liver transplant criteria. This page covers your side.

What centers typically expect from a caregiver

Requirements vary by center. There is no single national rule for how long a caregiver must stay or how many backups you need. The list below shows what many programs ask for. Use it to prepare, then ask your own center for its written requirements.

• 24/7 availability after discharge. Many centers ask that someone be with the patient around the clock for the first several weeks after leaving the hospital.
• A backup caregiver. Many centers ask for at least one named backup who can step in if the main caregiver gets sick, needs rest or has to go home.
• Transportation. A reliable car and driver for frequent clinic visits and lab draws, and for the trip to the hospital when a liver is offered.
• Staying near the center. Some centers ask the patient to stay close to the hospital for the first weeks or months after surgery, and some set a maximum driving time.
• Medication management. Helping sort, give and track anti-rejection medicines and others, and never letting doses get missed.
• Watching for warning signs. Knowing the signs of infection and rejection.
• Appointments and education. Going to clinic visits and to any caregiver classes the center requires.

Before transplant: keeping the patient ready

While your loved one is on the list, your job is to help them stay as healthy and as reachable as possible. NIDDK explains that when a matching donor liver is found, the transplant coordinator will call and ask the patient to come to the hospital. Offers can come at any hour.

• Phones on, always. Keep the patient's phone and yours charged, with the ringer on and the center's numbers saved. Make sure the center has every number that might reach you.
• A packed bag. Keep one ready for the patient and one for you: medicine list, ID and insurance cards, chargers, comfortable clothes, and a notebook.
• A travel plan. Know the route, who drives, and who covers children, pets and work if the call comes at 2 a.m.
• Keeping up with care. Help the patient keep appointments and lab draws, follow diet and fluid instructions, and avoid alcohol completely.
• Reporting changes. Tell the liver team about new confusion, bleeding, fever or belly swelling. Our guide to end-stage liver disease lists warning signs.

Our transplant checklist can help you keep track of documents and tasks.

Right after transplant: the hospital and the first weeks home

NIDDK explains that after surgery the patient stays in an intensive care unit, then moves to a regular hospital room, and can likely go home about 2 weeks after the transplant. Before discharge, the transplant team teaches how to care for the new liver, what follow-up care is needed and what problems to watch for. Go to these sessions if you can, and take notes.

The first weeks at home are usually the most demanding. You may be giving many medicines on a fixed schedule, keeping a log of temperature or blood pressure, driving to frequent clinic visits and lab draws, and helping with meals, bathing and walking.

Warning signs to know

Transplant medicines lower the immune system, which raises the risk of infection. NIDDK lists symptoms of infection that include fever, chills, a stuffy nose, sore throat, cough, diarrhea and vomiting. Rejection is most likely in the first 3 to 6 months and does not always cause symptoms, which is why regular blood tests matter. When symptoms of rejection appear, NIDDK says they may include feeling tired, belly pain or tenderness, fever, yellow skin or eyes, dark urine and light-colored stools. Your center will give you its own list. Keep it on the fridge.

The first months: stepping back slowly

NIDDK says most people can likely return to their normal activities after a few months, with regular checkups and anti-rejection medicines for life. Most caregivers find that the work changes over that time. Around-the-clock help gives way to rides, medication checks and moral support, as the patient becomes able to manage on their own.

The pace is different for every patient, and setbacks such as a hospital readmission are common enough that you should plan for one. Let the transplant team tell you when it is safe to step back. And keep an eye on yourself: a study of transplant candidates and their caregivers found that caregivers reported important levels of strain. Our page on caregiver burnout covers the signs and where to find help.

Work and money

Caregiving often collides with a job. Look into your options early, before the call comes.

• FMLA. The U.S. Department of Labor explains that the Family and Medical Leave Act gives eligible employees up to 12 workweeks of unpaid, job-protected leave in a 12-month period, including to care for a spouse, child or parent with a serious health condition. It can be taken intermittently or on a reduced schedule when medically necessary.
• Who qualifies. Generally, you must work for a covered employer (private employers with 50 or more employees, or a public agency), have worked there at least 12 months, and have at least 1,250 hours in the past 12 months, at a site with at least 50 employees within 75 miles.
• Paid leave varies by state. FMLA leave is unpaid. Some states run their own paid family leave programs, and some employers offer paid leave. Check with your state labor department and your HR office.
• Hidden costs. Gas, parking, lodging near the center and meals add up. Ask the social worker about lodging programs, travel help and fundraising options.

If no single person can do it all

Many families simply do not have one person who can take weeks off work and move near a transplant center. That does not have to end the transplant plan. It does mean you should talk to the transplant social worker early, before the evaluation is finished.

A common answer is a shared caregiver team: two to four people who split the weeks or the shifts. For example, an adult daughter covers the first two weeks, a brother covers the next two, and a close friend handles weekend rides. Ask your center:

• Will you accept a caregiver team instead of one main person?
• Does every team member need to attend caregiver education?
• Do you need each person's name and signed agreement before listing?

Put the team on one shared calendar with names, dates and phone numbers, and give a copy to the transplant coordinator.

If your loved one is listed at two centers

Some patients are evaluated at more than one center, which is called dual listing or multiple listing. Each center does its own evaluation, so your caregiver plan must work for both. That may mean two sets of distance rules, two lodging plans, and a way to get to either center quickly when an offer comes. Use our transplant center comparison to see where centers are, and ask each social worker what they require.

Questions to ask the transplant social worker

Bring this list to your next visit. Write the answers down, or ask for the center's caregiver requirements in writing.

For more on the whole caregiving journey, visit our Caregiver Hub and the caregiver guide to the waiting list.