Be your own kidney care advocate

Examples of self-advocacy in kidney care may include:

• Asking questions when you don't understand a diagnosis, test, or treatment.
• Requesting a second opinion if you're unsure about a care plan or treatment.
• Talking about the side effects of medicines so your doctor can adjust them.
• Bringing up treatment options like home dialysis or transplant.
• Keeping track of labs and blood pressure and sharing them with your care team.
• Asking for translated patient education materials in the language you need.
• Bringing a trusted friend or family member to appointments.
• Writing down questions before your visit so you don't forget.

Effective communication with your healthcare team 

Asking questions helps you understand your health and your treatment options. No question is too small. Your care team wants to help you understand. It's important to speak up if you are unsure about anything or want more information or clarification. The right questions can help you feel more in control of your care. 

One way to advocate for yourself is by asking clear questions. Here are some questions you can bring to your doctor, nurse or care team:

• What are all my treatment options?
• What side effects should I expect, and how can I manage them?
• How will this medicine or treatment affect my daily life?
• Can you explain that in simpler terms?
• Can you explain that one more time, I am not sure I understand?
• What do my lab results mean for my kidney health?
• Are there resources, like dietitians, social workers, or financial help, that I can use?

During your appointment

The information you bring helps your doctor make safer and more informed decisions. Use it to:

• Avoid harmful drug interactions and check that your medicine doses are right
• Identify whether your medicines could be causing side effects
• Track changes in your test results and guide treatment choices

Being organized during your visit saves time, avoids confusion, and helps you get the most out of your care. Bring a notepad to help you remember important details during the visit or invite a family member or friend to come with you. Having another person therecan make it easier to keep track of details and remember next steps once you're home.

Before you leave your appointment, make sure you fully understand the next steps in your care. It can help to ask for clarification on:

• Your diagnosis and what it means for your kidney health
• Any changes to your medicines, including dose and timing
• What symptoms or side effects you should watch for
• When are your next labs or follow-up visits scheduled
• Who to call if you have questions or new concerns

"I think it is important for people to advocate for themselves within the medical field. I had to become a specialist in my own disease so I could question and argue effectively with doctors throughout the years. I have worked hard to surround myself, in life and within my care team, with people I trust and who will advocate for me." - Michelle Farley, Patient Advocate

What if I disagree with my doctor? 

Doctors are experts, but they are not perfect. It's normal to sometimes disagree with their recommendations. You know your body best. If something doesn't feel right, you have the right to ask questions, share your concerns, and even get a second opinion. 

Good communication is key to making sure your voice is heard. If you feel misunderstood or dismissed, it's important to address it directly and respectfully. Here are the steps you can take:

• Clarify your concerns. Tell your doctor exactly what doesn't feel right and why.
• Ask for plain-language explanations. Request that medical terms be explained simply until you feel confident you understand.
• Bring support. A trusted family member or friend can help reinforce your questions and concerns.
• Seek a second opinion. It is your right to consult another doctor if you feel your needs are not being met or if you simply want another option.
  It may feel hard to speak up. Many people worry about taking up too much time or sounding "difficult." Remember, you are the most important member of your care team.

 It may feel hard to speak up. Many people worry about taking up too much time or sounding "difficult." Remember, you are the most important member of your care team.

What are my rights as a patient?

As a kidney patient, it's important to know that you are not powerless in your care. You have legal rights that protect your safety and choices. Understanding these rights can help you feel more confident and in control.

You have the right to:

• Be treated with dignity and respect, without discrimination
• Receive clear information about your diagnosis, treatment options and possible risks in plain language
• Ask questions and get honest answers from your care team
• Accept or refuse treatment, and seek a second opinion if you disagree with your doctor
• Access and review your medical records whenever you need
• Expect privacy and confidentiality in all parts of your care