Kidney Disease Diagnosis First Steps: Building Your Healthcare Team

Have you or someone you care about received a kidney disease diagnosis? Now what?

This is one of the scariest times for kidney patients, but you can regain confidence and control over your health with a bit of knowledge and the right healthcare team.

How bad is it?

Many patients are terrified to hear they have kidney disease or “kidney failure.” They don’t know much about kidney disease, but they know they don’t want dialysis or transplant. Some patients are even worried they are going to die. How bad is it?

For most cases, a kidney disease diagnosis means that your doctors have noticed a decrease in kidney function — your kidneys aren’t filtering your blood quite as well as they should. With proper treatment, most people should be able to preserve function and stay healthy.

In some cases, kidney problems can land you in an emergency room with little warning. At this point, life-saving emergency care may be necessary.

It’s critical to get routine lab work to prevent such emergencies — especially if you have “comorbidities” like hypertension (high blood pressure), diabetes, or are overweight. Proper routine testing should identify warning signs well before anything becomes a significant problem.

To find out what your kidney disease diagnosis means, you will need to consult with your healthcare team.

Step 1: Find a Patient Advocate

The American healthcare system is the biggest in the world. It’s easy to feel alone and lost in the system. That’s why the first thing I encourage my patients to do is to find a “patient advocate.”

This person can be a spouse, an adult child, or a close friend. They don’t need any special medical knowledge; they need to care about you and commit to helping you in your journey.

Your advocate should accompany you to your appointments to act as a second pair of ears. They might help you ask questions or take notes. Ultimately, they are your primary cheerleader and encourager.

Step 2: Talk to your PCP

Your primary care physician (PCP) is often the first step towards understanding your kidney disease diagnosis. Your doctor will review your test results and medical records to get a sense of what’s going on. They will ask you questions to understand the big picture related to any other issues you may have.

This is your chance to share your medical story and your concerns and fears. There is truly no such thing as a “dumb question.” There are many misconceptions around kidney disease, and this is the time to address them before they become a source of anxiety.

Your doctor will help you understand your actual risk, and together, you can come up with a plan of what to do and who to see next. Ideally, you will leave this appointment with a sense of optimism and hope.

Step 3: Identify your specialists

Your PCP should help determine what doctors you need to see next. Often, they will need to provide a referral to see any specialists. Depending on your health conditions, your team may include:

• Endocrinologist: These specialists focus on diabetes and obesity — two major risk factors for kidney disease. They can help you control your blood sugar through diet, lifestyle, and medications.
• Cardiologist: These specialists deal with the heart and blood pressure — another risk factor for kidney disease. They can help you keep your blood pressure under control.
• Nephrologist: Thesespecialists deal specifically with the kidneys. If your kidney health is declining or there is protein in your urine (proteinuria), you should see a nephrologist. You might not need to see a nephrologist if you have mild CKD and have been able to preserve kidney function, but you are always welcome to book an appointment if you need additional ideas or information.

No matter who you see, ask for doctors who are focused on health. Many nephrologists, for example, are simply concerned with dialysis and transplant. You need doctors committed to providing you with the tools and information you need to preserve kidney function and improve your overall health!

Find doctors willing to share information, data, prescription information, and lab work with your other specialists. They should all be working toward one common goal: your health!

Step 4: Collaborate

Remember, the most important member of your healthcare team is YOU! No one else has more perspective on how you’re feeling day-to-day, and no one else can follow through with the treatment and tasks you need to stay healthy.

Ask for coaching and training at each doctor’s appointment. Say, “teach me.” Be open! Be persistent and show initiative.

For my patients, that all starts with what we call “homework.” Walk into each appointment with your:

1. Home health data
   1. blood pressure
   2. blood sugar
   3. weight
2. Medication bottles
3. Patient advocate

If you bring these three things, I promise your doctors will be impressed with your initiative. Ask about how to improve your numbers. Ask about what your different medications do. They will see that you’re ready to work, and they will be eager to help you succeed.

Who should I trust?

Doctor-patient relationships aren’t always easy. It can be frustrating if you’re not seeing progress as quickly as you’d like. Consistency is important, however, so give everyone a fair chance. Ask yourself:

• Are they giving you tasks tostay healthy?
• Are they giving you tools/meds to preserve function?
• Are they giving you confidence that you’re on the right track?

If you’ve worked with a doctor for a while and still don’t feel like you’re getting engagement, education, and relationship, it may be time to explore other options. Ask your other healthcare team members for insights or recommendations if in doubt.

Whatever you do, remember to be careful about what you hear from friends or read online. There have been a lot of new studies and new medications that have come about in just the last few years. Your doctors should have the latest and greatest information for you.

Will I need kidney dialysis or transplant?

Only your doctors can give you a definitive answer about your unique health conditions and treatment options, but know there is hope!

Thanks to empowered healthcare practices and new medications, we’re helping many patients preserve kidney function. Even people with low GFR have been able to stabilize function and stay off dialysis.

So, get out there, talk to your doctors, and take some initiative. With the right healthcare team at your back, there are many things you can do today to pursue a healthy future.