How to Be a Caregiver for Someone in Need of an Organ Transplant

Patient advocacy, hands-on care and emotional support before and after surgery are critical to a successful outcome

Barbara Mantel,

AARP

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Published October 21, 2024

a figure in pink comforts a figure in blue

Elia Barbieri

When Ricky Dessen, 61, of New York City, first started experiencing shortness of breath four years ago, he thought his seasonal allergies were acting up. But the usual steroid prescription did not help, and his wife Flo, 60, watched helplessly as his condition worsened. Specialists could not pinpoint a cause.

“He just kept deteriorating and getting weaker,” she says. By February 2023, Ricky needed full-time supplemental oxygen to breathe, and a lung transplant seemed like the only solution.

“That’s when her caregiving really began because she started managing the oxygen deliveries,” says Ricky. Flo was also driving him everywhere and acting as his advocate at medical appointments.

“It was absolutely exhausting,” says Flo. But with the support of their doctors, their children, her sisters and some understanding friends, the couple persevered. Last February, Ricky received a lung transplant and no longer needs oxygen. Flo continues to advocate with his medical team and organizes the medications essential to transplant success.

The Dessens’ transplant experience is not unusual. “Family caregivers play a vital role,” says Yadira Montoya, programs director at the National Alliance for Caregiving. Hospitals require patients to have at least one caregiver lined up ahead of time to qualify for the transplant waiting list. Currently, there are 104,574 people waiting for donor kidneys, livers, hearts, lungs and other organs, two-thirds of whom are aged 50 and older.

If you are caring for someone before and after a transplant, here are five steps experts recommend you take.

1. Learn about the transplant process

It begins with a physician’s referral to a transplant center for an evaluation by a multidisciplinary team of surgeons, medical specialists, a social worker, a pharmacist, a financial counselor and a nurse coordinator, says Gloria Chen, the transplant social work supervisor at Dell Seton Medical Center at the University of Texas, Austin. Some large centers also have psychologists.

At the initial appointment, you both will receive education about the transplant process, says Heather Bruschwein, a clinical psychologist who works with transplant teams at the University of Virginia. Your loved one will then undergo medical tests to determine if they are an appropriate transplant candidate. When Ricky Dessen was evaluated in April 2023, doctors told him he must first lose weight before they would place him on the waiting list.

flo and ricky dessen smile at the camera

Flo and Ricky Dessen at home two weeks after his lung transplant.

Courtesy Dessen

In addition, both of you will meet with the social worker to determine if you are able to provide the necessary care. For example, a transplant center may require round-the-clock caregiving for one week following a kidney transplant or for as long as three months following a more arduous heart or lung transplant, says Kristin Kuntz, director of transplant psychology at the Ohio State University Wexner Medical Center.

The entire evaluation can take days or months, depending on your schedule and the availability of appointments, says Chen. “Once a patient has finished the evaluation, their case is presented to a selection committee,” she says. Not everyone will immediately, or ever, make it onto the waiting list. The demand for donor organs exceeds the supply, and hospitals want to maximize the chance of success.

Waiting time on the list varies depending on the organ the patient needs, how urgently they need it and even where they live, Chen says. It can range from days to five or more years, according to national data.

For more detailed information, you can turn to a new toolkit for transplant caregivers from the American Society of Transplantation. Chen and Bruschwein led the team that created it.

2. Ask questions

Attending each appointment during the evaluation process provides you with the information you need to prepare for each stage of the transplant journey and helps demonstrate to the transplant team that you are an able and committed caregiver, says Chen.

Be engaged. Ask questions. Take notes, says Madeline Marinaccio, 63, of New York City. She is a caregiver for her husband Gerard, 62, after his kidney transplant in April. Eighteen years earlier, Gerard had a liver transplant, and years of immunosuppressant drugs to prevent his body from rejecting the organ, plus diabetes, took a toll on his kidneys.

The toolkit lists general and organ-specific questions you can print and bring with you.

Some general questions include:

What are the risks and benefits of transplant?
What is the wait time in this region?
How long will recovery take?
What are possible complications from surgery?
What are the specific caregiver requirements?
Who on the transplant team will answer my questions?
How do I talk to my employer about taking time off from work?
What will be our out-of-pocket expenses for a transplant?
Is there a support group or mentoring program for caregivers?

3. Provide support while waiting

Once your loved one is on the waiting list, your primary responsibility will be to try and keep them relatively healthy so that they aren’t removed, says Montoya. “They would have to begin the whole process over again,” she says. Last year, nearly 6,000 people were taken off the waiting list because they became too sick to transplant.

You may also need to provide emotional support. Patients can be anxious while waiting because they don’t know when the call will come that a donor organ is available, says Chen. “There also may be feelings of grief and frustration when the transplant doesn’t happen in the timeline that they want,” she says.

Madeline Marinaccio provided emotional support to her husband, Gerard, through two transplant surgeries.

Courtesy Marinaccio

In addition, sometimes the call will come, and the patient and caregiver will rush to the hospital, only to be told the organ is not viable or a bad match. In researching a 2023 report on transplant caregiver needs, the National Alliance for Caregiving found some caregivers go through multiple "dry runs," , resulting in emotional ups and downs, says Montoya.

Madeline kept husband Gerard’s spirits up after he made the waitlist in May 2023 — and for months before, as well — by making sure he could safely shower. Gerard was on kidney dialysis to filter waste and excess fluid from his blood, and the catheter for the procedure had to be kept dry and clean to prevent infection. “I would assist him before every shower to secure the catheter area with a plastic square and waterproof surgical tape,” she says. Showering daily “was something that was very important to him.”

4. Prepare for intensive caregiving after transplant

“While the person is in the hospital for transplant, the caregiver might not be needed very much,” says Bruschwein. But that changes dramatically after discharge. To explain all that needs to be done, the University of Virginia gives each transplant patient and caregiver a large binder before they return home. Members of the transplant team review it with them, “and often it takes more than one meeting,” Bruschwein says.

Caregiver responsibilities after transplant include providing transportation to medical appointments, sitting in on those appointments and asking questions and taking notes, taking care of household chores and managing the multiple medications — as many as 15 — that patients take to prevent their body from rejecting the transplanted organ. That’s on top of drugs taken for any underlying conditions.

“Ricky takes a huge amount of medicine, 24 pills every morning and 14 every night,” says Flo Dessen. “And every Monday morning, he has to go and give blood [at a hospital near home]. By Tuesday night or Wednesday morning, they call, and we titrate [adjust the dose of] the medicines based on the results.”

Caregivers are also the eyes and ears of the medical team, reporting signs of infection or organ rejection.

Caregivers will likely need to continue providing emotional support. Their loved might become anxious if recovery does not go as planned or feel guilty about taking an organ from someone who has died, say psychologists. They may feel sad for friends on dialysis who have not received an organ. They may suffer from depression.

In the hospital after the transplant, “Ricky seemed elated and grateful,” says Flo. “But that changed as soon as we came home.” One of the anti-rejection medications was making Ricky depressed. He only recently was allowed to change it, and he’s feeling better, he says.

5. Seek support

The pressure on caregivers to ensure that their loved one’s transplant doesn’t fail is very real and shouldn’t be ignored. “The weight of that can be fairly immense and difficult to bear,” Chen says.

Don’t hesitate to contact the transplant team social worker if you or your loved one needs therapy or coping strategies, she says. And take advantage of supports groups or peer mentoring programs. The Marinaccios have been in a support group since Gerard’s liver transplant nearly two decades ago.

Participating in clinical trials: What to ask

There are currently 58 active studies in organ transplantation in the United States, according to clinicaltrials.gov. Many transplant centers conduct research and may ask your loved one to participate in a clinical trial of an experimental drug or a new combination of existing drugs.

Patients take multiple medicines after receiving an organ to prevent the body from rejecting it. But current drugs lose their effectiveness over time. They also have serious side effects with prolonged use.

Through clinical trials, “we’re looking to alleviate, mitigate and prevent chronic organ rejection and trying to find drugs that are less toxic,” says transplant nephrologist David Cohen, M.D., a professor of medicine at Columbia University Irving Medical Center who also leads transplant trials.

Cohen recommends caregivers and patients carefully read the trial’s consent form and not hesitate to ask the following questions:

What is the goal of the trial? Is it a phase 1 trial testing for safety, a phase 2 trial that tests different dosages, or a phase 3 trial that tests for efficacy?
How many patients have received this drug in earlier trials and what were the results?
Is the experimental drug being given in addition to the standard treatment or in place of the standard treatment?
Why is my loved one considered an appropriate participant?
What are the medical risks of participating in the trial? What are the benefits?
How inconvenient will participation be? Will there be additional healthcare visits, blood tests, procedures and questionnaires?
If I do well on the experimental regimen, can I continue taking it after the trial ends?

If possible, arrange for backup from friends and relatives. “In order to sustain caregiving throughout the transplant process, taking care of yourself is so important,” says Chen.

Barbara is a contributing writer who covers health, medical research and healthy policy. She is a longtime contributor to CQ Researcher and also has written for NBCNews.com, Monitor on Psychology and Medscape.