A Perspective from a ReMend Mentor

How to Be Your Own Best Medical Advocate When You Have CKD

By Jacee Crab

Yes, this is truly up to you.

It begins with empowering yourself by acknowledging that you have a serious illness. Chronic Kidney Disease (CKD) is a serious condition, and it is important to take it seriously and have a treatment plan to help slow progression.

There is currently no known cure for CKD. There are treatment options and ongoing care that may help, including regular doctor visits, lab tracking, prescription medications, diet and exercise changes, counseling, dialysis treatments, and kidney transplant options.

From this point forward, it helps to keep a positive, upbeat attitude and do your best to be an active participant in your care. Seek advice, ask questions, and follow known medical practices that may help slow kidney disease progression.

You have choices. Make them with confidence, and work closely with your care team to support your health and quality of life as much as possible.

One of your first choices should be to find a doctor (or group of doctors) who specialize in treating kidney disease. This specialty is called Nephrology. Your nephrologist and care team will use blood tests and other standard kidney disease lab tests to understand your current condition.

When you review test results with your nephrologist, it may feel overwhelming at first—and that is completely normal. Take notes. Have a partner, family member, or trusted companion join you if possible. They may catch or remember something you missed.

Your doctor will make a personalized treatment plan for you. Be a good patient and follow their advice. This includes understanding what medications you are taking, ordering them on time, and taking them as directed.

Another important part of slowing CKD progression may be changing the way you eat. Finding a kidney-friendly diet can make a big difference, but it can also feel like a major lifestyle shift.

With CKD, your kidneys may need extra support, and food choices can matter a lot. This often takes research, planning, and patience. It may feel like a lot at first—but the effort is worth it.

A good place to start is by learning more about kidney-friendly foods and asking your doctor or renal dietitian what is right for your stage of CKD and your lab results.

When I realized I needed to change my diet, I made a list of foods to focus on and foods to be careful with, and I posted it on my refrigerator so my whole family could support me.

There are some common areas your care team may talk with you about, such as sodium, phosphorus, potassium, protein, and other dietary changes. But everyone is different, so it is important to follow your provider’s guidance for your specific needs.

Yes, this is a big change. Once you get used to it, your new diet can become an important part of a healthier lifestyle.

Above all, stay positive and stay involved in your health care.

You are your strongest advocate—and your voice matters.

Looking for more support and real-life encouragement? Visit the ReMend Resources page for mentor perspectives and kidney journey resources.