More than one in seven adults in the United States have chronic kidney disease, according to the Centers for Disease Control and Prevention (CDC). That means 37 million people, most of them over the age of 50, are living with varying levels of chronic kidney disease.
When a kidney fails or has extremely low function, a kidney transplant is a life-saving procedure. The year 2021 was a record year for kidney transplants: 24,669 people received a donor kidney, according to the United Network for Organ Sharing. Amy Waterman, PhD, a professor and director of patient engagement at Houston Methodist Hospital, says life after a kidney transplant is full of possibilities.
“If you imagine that the person is on dialysis every other day and is exhausted and is on a renal diet, then having a kidney transplant opens up a world again,” says Dr. Waterman.
The first year after a transplant is busy, says Bernard Victor Fischbach, MD, a nephrologist and director of kidney transplantation at Baylor University Medical Center in Dallas. Immunosuppressants, among other medications, such as blood pressure or diabetes medications, help the patient accept their new kidney. After the initial hospital stay, a transplant recipient returns to the clinic twice a week, then with decreasing frequency to once a month. These visits are to monitor the immunosuppressive medication and how the kidney adjusts to its new body. Dr. Fischbach says that it is the period with the highest risk of acute rejection.
“Often people hear ‘rejection’ and think it’s the worst case scenario,” says Fischbach. “We make the diagnosis with a biopsy, and most of the time, we can reverse that.” It’s important to keep all your follow-up appointments so your medical team can catch and treat any complications early.
How friends and family can help
Waterman says that post-transplant support involves 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,” Waterman says. “Everyone celebrates that the transplant is working.”
So the first step is to celebrate with them! A new kidney is life-changing and removes many of the restrictions your loved one has been living with. If you were on dialysis before the transplant, your loved one was limited in how much water they could drink. Imagine not being able to drink water when you’re thirsty, and finally being able to drink whenever you want. Waterman says that after a transplant, even peeing can become joyful.
Here are some other ways to be with your loved one during this adjustment.
Stock your fridge with healthy foods and foods that have gone missing
Patients with kidney disease often follow a renal or “kidney friendly” diet to keep their fluid, mineral and electrolyte levels in balance. Kidney-friendly diets restrict potassium, salt, and phosphorus. That means cutting back on tomatoes, bananas, beans, green vegetables, grains, and nuts.
But after a kidney transplant, you don’t need to follow a renal diet (unless your doctor tells you otherwise). Waterman says that he asks his loved one what foods are missing and he fills his fridge with those.
“Pizza is common!” she says.
Help set up systems to manage your new medical needs
The prospect of keeping track of new medications and doctor appointments after a transplant can be intimidating. The first weeks are intense, with monitoring and medication several times a day. Waterman suggests helping your loved one set up a reminder app for appointments and knowing when it’s time to take medication. Taking them to their appointments and errands will also be a big help because they won’t be allowed to drive right away.
It is important to take great care to avoid infection and disease while taking immunosuppressive medications after a transplant, especially with the continued presence of COVID-19. Although kidney transplants involve close matching to ensure a match, recipients will continue to require lifelong immunosuppressants after transplant.
With immunosuppressants, Fischbach says, “we’re trying to tell the body ‘this organ may not belong to you, but you have to accept it.'” It’s important to get screened for diseases like skin cancer that your loved one may be more prone to for a while.
Connect them with resources
Sometimes your loved one needs to connect with people who understand firsthand what they are going through. As much as you care, somehow you will never fully understand what they have experienced. But you can connect them with 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 one may want to read these stories of other people’s experiences receiving a transplant. You may also understand a bit more by reading these personal accounts.
There is also the International Transplant Recipients Organization (TRIO), which provides education and support for transplant recipients of all kinds, 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 to donate their kidney, if they are eligible, according to the National Kidney Foundation. Fischbach says that most deceased donor kidneys come from people who are brain dead and have previously committed to organ donation. Many kidney transplants come from deceased donors.
Every day, 13 people die waiting for a new kidney, notes the NKF. Becoming a donor means that you are helping to meet that dire need.
“Kidneys from living donors can start working right in the operating room,” says Fischbach. He also points out that people who receive kidneys from a living donor tend to live longer, although both types of donation provide a great improvement in quality of life. A 2014 retrospective cohort study published in Nephro-urology Monthly analyzed data from 218 kidney transplant patients and found that while living-donor and deceased-donor transplants are successful, especially in the short term, living-donor kidney transplants have higher long-term survival rates.
According to the NKF, a kidney from a family member who is genetically similar is less likely to be rejected by your body. 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 see how stressful and limiting it is for someone else to live life on dialysis,” Waterman says. “If they are not a match for a particular person and are healthy, some feel called to help humanity in general by donating a kidney to a stranger.”