How to Support Someone Who’s Had a Kidney Transplant
According to the Centers for Disease Control and Prevention (CDC), more than one in seven adults in the United States has chronic kidney disease. This means that 37 million people, most of whom are over the age of 50, are living with some degree of chronic kidney disease.
When a kidney is failing or has extremely low function, a kidney transplant is a life-saving procedure. The year 2021 was record-breaking for kidney transplants: 24,669 people received a kidney from a donor, according to the United Network for Organ Sharing. Amy Waterman, PhD, professor and director of patient engagement at Houston Methodist Hospital, says life after a kidney transplant is filled with opportunity.
“If you imagine that person is on dialysis every other day and exhausted and on a kidney diet, then a kidney transplant opens up a whole new world,” says Dr. Waterman.
The first year after a transplant is busy, says Dr. Bernard Victor Fischbach, nephrologist and director of kidney transplantation at Baylor University Medical Center in Dallas. Immunosuppressants and other medications, such as blood pressure or diabetes medications, help a patient accept their new kidney. After the initial hospital stay, a transplant recipient comes into the clinic twice a week, then at a decreasing frequency, until they end up once a month. These visits are to monitor immunosuppressive medications and to accommodate the kidney in its new body. dr Fischbach says it’s the time with the highest risk of acute rejection.
“People often hear ‘rejection’ and think it’s a worst-case scenario,” says Fischbach. “We diagnose with a biopsy, and most of the time we can reverse that.” It’s important that you attend all follow-up appointments so your medical team can identify and treat complications early.
How friends and family can help
According to Waterman, post-transplant support includes both helping with the logistics and helping your loved one find a new normal.
“When people get a kidney transplant, all of their family and friends are really there to help them get through the surgery and recover in the short term,” says Waterman. “Everyone is celebrating that the transplant is working.”
So the first step is to celebrate with them! A new kidney is life-changing and lifts many of the limitations your loved one has been living with. If you were on dialysis before the transplant, your loved one was limited to drinking water. Imagine not being able to drink water when you’re thirsty – and then finally being able to drink as you please. Waterman says even urination can become joyous after a transplant.
Here are some other ways to be with your loved one during this adjustment.
Stock your fridge with healthy foods—and foods you’ve been missing
Patients with kidney disease often follow a kidney- or “kidney-friendly” diet to balance their fluid, mineral, and electrolyte levels. Kidney-friendly diets restrict potassium, salt, and phosphorus. That means cutting back on tomatoes, bananas, beans, greens, cereal, and nuts.
But after a kidney transplant, you don’t have to follow a kidney diet (unless your doctor tells you otherwise). Waterman says you should ask your loved one what groceries they’ve been missing and stock their fridge with them.
“Pizza is a joint!” She says.
Help set up systems to manage their new medical needs
The prospect of keeping track of new medications and doctor appointments after a transplant can be intimidating. The first few weeks are intense, with follow-up care and medication being taken several times a day. Waterman suggests helping your loved one set up a reminder app for appointments and when it’s time to take medication. It will also be of great help to drive them to their appointments and errands as they are not allowed to drive right away.
It is important to take extra care to avoid infection and illness while taking immunosuppressive medications after a transplant, especially in the ongoing presence of COVID-19. Although kidney transplants require rigorous fitting to ensure compatibility, post-transplant recipients require lifelong immunosuppressive drugs.
With immunosuppressants, Fischbach says, “we’re trying to tell the body that this organ might not be yours, but you have to accept it.” He says because immunosuppressants suppress the normal, good activity of your immune system, it’s important to to be checked for conditions, such as skin cancer, which your loved one may be more susceptible to for a while.
Connect them to resources
Sometimes your loved one needs to connect with people who understand firsthand what they are going through. As much as you care, in a way you will never fully understand what they experienced. But you can connect them to resources and people who do.
The Living Donation Storytelling Project collects stories from people who have donated kidneys and people who have had kidney transplants. Your loved ones may want to read these stories about other people’s experiences of receiving a transplant. You might also understand a little more by reading these personal accounts.
There is also the Transplant Recipients International Organization (TRIO), which educates and supports transplant recipients of all types, including kidney recipients.
Consider becoming a donor yourself
The two methods of kidney transplantation are living donor transplantation and deceased donor transplantation. Living donors can register with the National Kidney Foundation to donate their kidney if they are eligible. Fischbach says most deceased donor kidneys come from people who are brain dead and have previously committed to organ donation. Many kidney transplants are from deceased donors.
The NKF notes that 13 people die every day waiting for a new kidney. Becoming a donor means you are helping to meet this urgent need.
“Living donor kidneys can start their work directly in the operating room,” says Fischbach. He also notes that people who receive kidneys from a living donor tend to live longer, although both types of donation offer huge quality of life improvements. A 2014 retrospective cohort study published in Nephro-Urology Monthly examined data from 218 kidney transplant patients and found that while both living and deceased donor transplants are successful, particularly in the short term, living donor kidney transplants have a higher long-term survival rate.
According to NKF, your body is less likely to reject a kidney from a family member who is genetically similar. Even if you can’t donate to your loved one yourself, you can support someone in a similar situation in their honor.
“People who know someone with kidney disease and kidney failure can see how stressful and debilitating it is for someone else to lead a life on dialysis,” says Waterman. “When mismatched and healthy, some feel compelled to help all of humanity by donating a kidney to a stranger.”