From patient to partner: how active participation gets better results!

In July 2025, my niece went into kidney failure and started dialysis treatments. Three months later, the nephrologist informed her that the damage was irreversible and she’d need dialysis permanently. Her primary care doctor suggested she add her name to the transplant list.

But her aunt Marie and I had some different advice for our niece. Marie said to her in her “you better listen to me” tone of voice: “Brin Brin, talk to your kidneys—apologize for damaging them and promise to treat them better if they give you another chance.” I sat down with Brin and showed her how to journal her way through it.

In December 2025, one day seemingly out of the blue, all readings at the dialysis clinic indicated that Brin’s kidneys were functioning normally, so the doctor stopped dialysis. Neither Brin nor the staff could believe it!

But as excited as Brin was, the first three weeks post-dialysis were so rough that she questioned whether the doctor had made a mistake. She had no energy, struggled to breathe, her feet and ankles were swollen, and her blood pressure spiked. Unable to reach her doctor, I advised her to head to the ER.

ER tests showed Brin’s potassium level was extremely low, so they dosed her up and advised follow-up with her kidney doctor. Gradually, she began to feel better, but doubts lingered.

I reminded her that reversing years of kidney damage would take time, and she would have to take an active role in helping her doctor find the right balance of medications. In addition to her daily gratitude list and tracking her blood pressure and how she felt, I gave her a list of additional tasks to complete before her visit with her kidney doctor.

Brin went to the follow-up visit prepared. The doctor addressed her concerns and adjusted her medications. She shared with us how amazed she was that Brin had beaten the odds and cleared her to return to work.

Is Brin cured? No. There are no guarantees. But she’s better! And if she follows her Aunt Marie’s advice -keep her promise to her kidneys – along with continuing to take an active role in her treatment plan, she’ll be well.

Here’s the bottom line: When it comes to treating disease, you and your doctor make the best team when you actively participate in the plan. The doctor may have an expert body of knowledge, but you are the expert on how your body feels. You are the only one with your body 24-7, so without your input, your doctor must generalize treatment, and that doesn’t always lead to the best outcomes. As Brin is learning, you are a unique individual, and your care plan should reflect that.

Be an active participant, Be Well!

Do you or someone you know need help managing a chronic condition? I’m here to help. Reach out to me at smallchange@myrtlerussell.com.  

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