Transportation for transplant patients: evaluation visits, the call for an organ, and months of follow-up

Plan for three kinds of trips

A transplant needs rides in three phases, and each phase asks something different of the driver and the family:

1. Evaluation and waiting. Several scheduled visits to the transplant center over weeks or months, then regular tests while on the list.
2. The call. One unscheduled trip, on short notice, when an organ is offered.
3. Recovery. Frequent checkups after discharge, often with the patient living near the hospital for the first few months.

Programs evaluate each candidate’s readiness before listing, so a ride plan is worth writing down early. This guide takes each phase in turn, then covers who pays.

Before listing: evaluation visits and the ride plan

Expect several trips before a patient is ever on the list. NIDDK says kidney transplant testing can mean several trips to the center spread across weeks or months, covering the heart and other organs as well as mental and emotional health. MedlinePlus says heart transplant candidates make many evaluation visits, also spread across weeks or months.

The mental and emotional part is a federal requirement. Before a program puts a candidate on its waiting list, the candidate must receive a psychosocial evaluation if possible (42 CFR 482.90). NIDDK explains that the team must be sure the patient can care for the new organ, including following the medicine schedule after surgery. The same rule requires the program to give a copy of its patient selection criteria to a patient, or to their dialysis facility, on request.

Dialysis patients have a head start. A dialysis facility’s plan of care must include a plan for transplantation when the patient accepts a referral (42 CFR 494.90), and NIDDK says the dialysis team is part of the process. Kidney candidates also need monthly blood tests while they wait, because the center needs a current sample on hand to match against any kidney that becomes available. Our guide to getting transportation to dialysis covers the rides in the meantime.

Bring a written ride plan to the social work visit. It should answer:

• Evaluation and waiting visits. Who drives, and what happens when that person is working.
• The call. A primary driver and a backup, both reachable day and night.
• Recovery. Where the patient will stay, and who drives to checkups during the first months.
• Money. Which program pays for which trip, from the options further down.

When the call comes

The call for a deceased-donor organ comes without warning, and NIDDK says a kidney candidate must go to the hospital as soon as they learn a kidney is available. A living donor transplant is different: it is scheduled ahead, and NIDDK says the surgical team usually operates on donor and recipient at the same time, in side-by-side rooms.

MedlinePlus gives the same instructions for kidney and liver candidates: keep the team supplied with current phone numbers, stay reachable fast wherever you are, and keep everything packed for the hospital trip. Its pages also show why the clock differs by organ. A donor kidney can be preserved for up to 48 hours, while a donor liver keeps for up to 8 hours, so a liver call leaves less room for a slow trip. Heart candidates are a separate case: MedlinePlus says most heart candidates are sick enough that they already need hospital care while they wait.

Get three answers from your coordinator now, not on the night of the call:

1. How soon after the call the program expects you at the hospital.
2. Which entrance or desk to go to, and where to park.
3. Whom to call if your driver falls through.

A Medicaid ride line may not be fast enough for this trip. Scheduled rides usually need days of notice; Virginia’s fee-for-service handbook, for example, asks for five business days for routine rides. Urgent rides there can be booked 24 hours a day, but the broker may check with the health care provider that the trip is urgent first. Treat a family driver as the main plan and the ride line as the backup, and confirm with the coordinator how your program handles this.

After surgery: weeks of close follow-up

Recovery brings the most rides, and for most organs the team may want the patient living near the hospital for about the first three months. MedlinePlus gives these typical figures by organ:

For every organ, MedlinePlus says checkups with blood tests and x-rays continue for many years. NIDDK adds that kidney recipients start with regular checkups and blood tests and need fewer as time goes on.

Heart recipients may have rehab rides on top of clinic visits. Medicare covers cardiac rehab after a heart or heart-lung transplant, up to 36 one-hour sessions (42 CFR 410.49). Our guide to rides to physical therapy and rehab covers how to book a course like that.

Who pays for which trip

Each program pays for a different part of the travel, and Medicare pays for none of it.

• Medicare. Medicare covers heart, lung, kidney, pancreas, intestine, and liver transplants at Medicare-approved facilities, and for a kidney transplant it covers the living donor’s care too. Medicare.gov is direct about travel: Medicare does not pay for the trip to a transplant facility. If you are thinking about a Medicare Advantage plan while on a waiting list, Medicare.gov says to check first that your doctors and hospital are in its network.
• Medicaid. Medicaid must ensure rides to covered care for members with no other way to get there, and federal rules count meals and lodging on the way and during care, plus an attendant’s costs, as travel expenses (42 CFR 440.170). For a child, CMS says the state must cover the trip of the adult who accompanies them, including out-of-state round trips for admission and discharge.
• VA. Veterans can get travel pay for VA-approved transplant care, and VA may also pay transportation, lodging, and meals for the veteran’s transplant donor or support person.
• American Kidney Fund. Its Safety Net grant helps both dialysis and transplant patients with costs insurance does not pay, transportation included. In most states the grant is $200 a year, and the transplant or dialysis social worker can help with the application.

Two state rules show how Medicaid handles distance:

• Washington. Rides normally go to local providers only, but the broker can approve trips outside the community when the care is not available locally or for continuity of care, and a transplant in the last 12 months is one of the listed examples (WAC 182-546-5700). The approval is for a limited period, and each trip must relate to that ongoing treatment.
• Missouri. Meals and lodging are covered when the appointment requires an overnight stay and no free option exists. The broker contacts nonprofit housing such as a Ronald McDonald House before hotels, and covers one parent’s meals and lodging when a child is hospitalized for a covered transplant.

Trips that cross state lines bring their own approvals, covered in our guide to out-of-state trips.

Lodging and volunteer help

Free or low-cost lodging near the center can replace months of long drives. The Healthcare Hospitality Network links houses that host patients and caregivers who travel for treatment. Most of its members charge little or nothing, whatever the guest’s income, and each house sets its own rules. For the paperwork side of Medicaid hotel and meal coverage, see our guide to Medicaid lodging and meals for medical travel.

Volunteer travel programs work from scheduled appointments, not the organ call. Mercy Medical Angels, for example, arranges flights with volunteer pilots across the Mid-Atlantic, and airline tickets, ground rides, or gas cards anywhere in the country. It lists transplant evaluations and follow-up among the visits it serves, generally for trips of 50 miles or more one way, and asks for at least 7 to 10 days’ notice. Families moving a patient a long way for care can also compare the options in our guide to transporting an elderly parent long distance.

For the transportation company on transplant trips

A transplant patient can be on the schedule week after week for months, often with a caregiver who wants to know exactly when the van will arrive. HealthRide’s recurring trips set that pattern once. Riders and families follow their driver live from a text link, so the person waiting at the entrance knows when to step out. See how recurring trips work.