Experiencing kidney failure can be a scary time, which is why it’s so important to prepare for that eventuality. Here, two-time kidney recipient Nichole Jefferson speaks with kidney advocate and principal of Voice of the Patient, Inc. about how research and persistent self-advocacy helped her achieve her health goals and live her best life.*

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Trusting her body

Jefferson received her first kidney transplant in 2008. Her surgeons told her that the kidney should last about four to six years, but it actually lasted quite a bit longer. In 2016, she recalls, “I started to feel as though the kidney was failing.”

She kept going to her nephrologist, sharing her concerns, but the doctor kept responding that the kidney was fine and that her lab tests showed that her numbers were right where they should be. She eventually requested a biopsy, just to be sure, and the nephrologist refused.

Finally, after six months, Jefferson told her doctor that she planned to consult with another nephrologist who would do the biopsy for her. The doctor grudgingly agreed to order the procedure.

When the results came back, the doctor told her that the kidney was 90% scarred. “Based on that,” she asked him, “is it ok if I start listing for another kidney?” He told her yes.

Tips for choosing transplant lists

Most prospective kidney transplant recipients “think that they have to list wherever they are,” Jefferson says, but that’s not actually so. When it came time to start putting her name on organ waiting lists, she adds, “I made sure that I chose the best transplant center for me.”

She researched which transplant centers around the country had the fastest transplant turnaround times, but ruled out any facilities that she didn’t feel had her best interests at heart.

Her tips to people with or nearing kidney failure are to:

• Research and study your available treatment options,
• Make sure to choose what aligns with your health goals and, and
• Reach out to people who have been where you are now and can share their wisdom with you.

It’s also important to choose options that best fit both your needs and preferences, she says. Consider your lifestyle and which decisions would best support maintaining it. 

The second go-round

Jefferson moved to Texas in 2018. Her new nephrologist tried to persuade her to start dialysis, stating that she was in danger of “crashing”(starting too late), but she didn’t feel that she needed it yet. She even got a second opinion from a transplant surgeon who wound up agreeing with her. The nephrologist didn’t bring it up again for another two years.

At the start of the COVID-19 pandemic in March 2020, Jefferson approached her doctor for a note so she could start working from home. This time he again urged her to start dialysis. At that point, she admits, she had started noticing some swelling and other signs that dialysis was called for, and she promised the doctor that she would start it in July.

In April, however, she received a call from a transplant center in Iowa regarding a potential kidney, but warned her that the kidney was “risky” and that several surgeons in Washington, where the kidney would come from, had already declined it.

After conferring with her daughter, Jefferson decided to go for it, and she was told, “Ok, be in Des Moines in five hours.” She arrived at the transplant center before the kidney did.

Four years later, she hasn’t looked back even once. “The second transplant is wonderful. I feel better than I have since about a year before I went into kidney failure,” she claims. “Because I’m doing so good, it upsets me that this kidney was almost thrown away.”

Her advice to other kidney patients is to understand your treatment options, engage with others in the transplant community, and always advocate for yourself. 

“Trust your body,” she says. “It’s telling you what it needs.”

*PlatformQ Health. (2024, March 27). Shared Decision-Making in Kidney Transplantation [Video File]. https://www.medlive.com/patient/show/24-03-27-shared-decisionmakin/ftwes-presentation-page 

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