Responsum Health’s recent Fireside Chat, “How to Stay Off Dialysis,” brought together CKD advocates and transplant recipients Dave White, Kevin Fowler, and Nichole Jefferson. Moderated by Responsum Health, the conversation revealed a powerful truth: while not all kidney failure can be prevented, many patients have more control than they realize.*

Here are the most important insights shared with the community.

1. Know Your Diagnosis and Stage

One of the strongest themes was the importance of truly understanding your condition—not just that you “have kidney disease,” but what type and what stage.

• Ask your care team:
  
  • “What caused my kidney disease?”
  • “What type of kidney disease do I have?”
  • “What is my current eGFR and CKD stage?”
• Know whether your CKD is related to diabetes, high blood pressure, polycystic kidney disease, or another cause—because different causes may have different treatment options, including newer medications and clinical trials.

If your doctor dismisses the question of “why” or can’t explain it clearly, that’s a sign to seek another opinion. Understanding the cause can shape your treatment, your monitoring plan, and your long-term options.

2. Advocate Fearlessly for Yourself

All three panelists shared moments where advocacy changed their path, especially around avoiding or delaying dialysis.

Key advocacy behaviors they highlighted:

• Trust your body. If you feel something is wrong, say so, even if your labs “look fine.”
• Ask for needed tests. For some, a kidney biopsy gave crucial answers and allowed them to pursue a transplant earlier, rather than waiting until dialysis was unavoidable.
• Don’t stay with a doctor who won’t listen. You have the right to switch providers, ask for referrals, and “interview” new doctors to find someone who respects your questions and goals.

A practical tip: go to every visit with a written list of questions, and make sure you ask your top one before you leave. Those 15 minutes are yours, use them. Download the list of questions for your care team here: 

3. Build a Care Team That Works With You

Good CKD care is a partnership. The panelists recommended looking for doctors who:

• Explain things clearly and don’t dismiss questions
• Are open to discussing new treatments and clinical trials
• Treat you like a person, not just a lab result
• Are willing to coordinate with others (primary care, cardiology, endocrinology, mental health, dietitians)

If your visits feel rushed or you leave more confused than when you arrived, that’s feedback. It’s okay to say, “This isn’t a good fit for me,” and look elsewhere.

4. Support Your Kidneys Through Lifestyle & Mental Health

Dialysis prevention isn’t only about medications and lab numbers. The panel repeatedly returned to lifestyle and mental health as core tools for protecting kidney function and quality of life.

Physical health

• Aim for regular, realistic movement: walking, light stretching, or simple home exercises.
• Work with a renal dietitian when possible to tailor your diet to your lab results and CKD stage.
• Keep blood pressure, diabetes, and weight under control to reduce strain on your kidneys.

Mental health

Living with CKD is emotionally heavy. Depression, anxiety, and burnout can lead to missed appointments, skipped meds, or unhealthy coping habits, all of which can speed kidney decline.

Panel advice included:

• Consider counseling or therapy—especially with someone willing to learn about CKD and dialysis.
• Build a peer support network of people who actually live with kidney disease; they can offer understanding that family members, however loving, may not have.
• Be selective about who you spend time with; keep people around you who support your health goals and don’t undermine them.

5. Monitor Yourself Between Appointments

You see your care team only a few times a year—but you live with CKD every day. The panel encouraged patients to pay attention to basic changes and take them seriously.

Things to watch:

• Weight changes (especially rapid gain from fluid or unexplained loss)
• Urine changes – darker color, foaminess, or much less output
• New or worsening symptoms such as nausea, extreme fatigue, swelling, or shortness of breath

Use tools like patient portals (e.g., MyChart) to track your lab trends and prepare questions for each visit. Anything that seems “off” is worth raising with your doctor—don’t wait until it becomes a crisis.

6. Think About Transplant Options Early

For many people, kidney transplant can be a better option than long-term dialysis, but planning takes time.

Panel guidance:

• Discuss transplant early, especially once your kidney function starts declining more quickly.
• Ask about getting on the transplant list as soon as you’re eligible.
• Talk with family, friends, and your broader community about the need for a kidney, so potential living donors have time to learn and consider.

Several panelists described preemptive transplants (before starting dialysis) that were only possible because they pushed for answers, got biopsies, and started the listing process years in advance.

At the same time, they were honest: transplant is not a cure. It’s another stage of CKD, with its own medications, risks, and work. But for many, it’s still far better than long-term dialysis.

7. Stay Informed About New Treatments and Clinical Trials

Innovation in kidney care is moving faster than ever; new drugs, new approaches, and new devices are in development.

Practical ways to stay informed:

• Visit clinicaltrials.gov and search for your specific kidney condition.
• Follow kidney organizations and advocacy groups for trial news and policy updates.
• Don’t assume your doctor will always bring up clinical trials; sometimes they aren’t involved in them. It’s okay to ask directly, “Are there any clinical trials that might fit my situation?”

The key message: hope is real—but it’s not a reason to wait passively. New options work best when you’re already engaged in your own care.

Final Thought: Empowerment Is Kidney Protection

Across the entire conversation, one message kept resurfacing: do not accept the status quo.

You deserve to understand your diagnosis, to be heard in the exam room, to access mental health support, to explore transplant and clinical trials, and to be part of decisions about your own body.

You may not be able to control everything about CKD—but you can control how informed, prepared, and supported you are. And that can make a real difference in how long you stay off dialysis and how you feel along the way.

* Responsum Health—Fireside Chat Session (November 20, 2025). “How to Stay Off Dialysis: Tips for Taking Charge of Your CKD Journey”

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