Heading your kidney disease health care team

It can be overwhelming to discover you have chronic kidney disease. Sometimes the amount of new information seems mind-boggling, but it’s important for you to remain calm. You may feel like you’re losing control, but in fact, you are the key to maintaining your health. You, above any doctor, nurse or dietitian, are the head of your kidney disease health care team. 

The one person who has been an intimate part of your health care since day one is you. You know how you feel when you get the flu, you know how your body responds to medicine, you know if you’re allergic to something, and you’ve known yourself your whole life. Now that you are dealing with kidney disease, your job has become even more important.

Doctor's role in your kidney disease health care team

It’s always a good idea to follow your kidney doctor’s advice. They have gone to medical school, seen many patients and chosen a career to help people with kidney disease. While doctors are loaded with medical information, they are people first. Doctors may assume you understand everything when you don’t, they may not be aware of personal situations, and sometimes they don’t have all the answers.  

That’s why you need to be the head of your kidney disease health care team. The kidney doctors, nurses and renal dietitians are on your health care team, and you are a key player in that team. If something’s not right, you must consult your health care team to find a solution. If you’re unclear on anything regarding your treatment or kidney disease care, ask again. Your health is the priority of your team and when you succeed, so do they.

Do you need a kidney disease health care advocate?

It’s common to freeze up at the doctor’s office. Some people’s blood pressure goes up by simply sitting in the doctor’s waiting room. Many patients forget what they wanted to say once they get to the office, and others neglect to share their worries or concerns because they don’t want to “bother” anyone. In extreme cases, people ignore their symptoms and don’t see a doctor until the problem has become worse than necessary. If you or a loved one has these feelings, the perfect solution is to ask a friend or relative to be your kidney disease health care advocate.  

You can accept help and still be the head of your kidney health care team. A spouse can be supportive, but perhaps too emotional about the process. If this is the case, a friend, cousin, grandchild or anyone who can remain neutral will make a good advocate. Your kidney disease health care advocate can reiterate the facts, make sure you feel comfortable with the information provided and be an extra set of ears. As the head of your kidney disease health care team, you are being proactive.

Being your own kidney disease health care advocate

If you feel confident being your own kidney disease health care advocate, be sure to cover all your questions and concerns by making a checklist. The best way to tackle issues is to keep a pad of paper handy and when you think of things you want to discuss with your doctor, jot them down. On your next doctor’s visit take out your pad and cross each item off after you address it. Your medical team will be impressed, and you will also get more out of your visit. 

If you have a pressing concern that won’t wait until your next doctor’s appointment, feel free to call your doctor, nurse practitioner or renal dietitian. You can also start researching your question on www.davita.com. DaVita offers a comprehensive and easy to use website that specializes in renal (kidney) education.

Organize your kidney disease education

A fun part of education is shopping for school supplies. Learning everything about your condition is like going back to school. The first step is getting organized. Make the learning process enjoyable by getting fun supplies. A notebook, a variety of color pens/markers, folders, a daily calendar and an appropriate size daily/weekly pillbox is a good start. You may want to organize like this:

  • Colorfully label your notebook or folders with titles such as:
    • Medical Info
    • Diet & Recipes
    • Medicine
    • Exercise
    • Family History
  • Utilize your daily calendar: (use your color pens to color code)
    • Doctor’s appointments
    • Make a daily note recording how you feel each day
    • Plot out exercise plan
    • Record how your daily diet is working (or not) for you
    • Write down medicines you take, including the dose and time for each
  • Organize prescribed medications in a daily/weekly pillbox so taking the appropriate dosage each day is a no-brainer.
  • Keep your note pad handy to write down any concerns or questions that arise throughout the day, especially those related to kidney disease and the health care you are receiving.

Start talking about kidney disease

You will be surprised how much you have in common with people when you start talking to them. Many people either know someone who has kidney disease, has anxiety around doctors or know something that could help you.  

The four leading causes of kidney disease are: 

  • Diabetes
  • High blood pressure
  • Glomerular kidney diseases
  • Polycystic kidney disease (PKD)

The statistics are staggering: 

  • The American Diabetes Association says about 23.6 million Americans have diabetes.
  • The American Heart Association reports approximately 73 million Americans suffer from high blood pressure.
  • The National Kidney Foundation states more than 26 million Americans are living with kidney disease. That translates to 1 in 9 people.

Opening up the lines of communication with friends, family and strangers can help you get comfortable with and learn about your kidney condition. Family reunions can be a good opportunity to discuss family medical history and share information.

Helpful kidney basics

Being proactive can help in your efforts to maintain kidney function, slow the progression of chronic kidney disease or prevent kidney failure. Here are some helpful tips:  

  • Keep scheduled doctor appointments.
  • Take prescribed medicine correctly.
  • Make a list of questions before visiting your doctors.
  • Consult your doctor before taking any over-the-counter medications or supplements. These may interfere with prescribed medication or be dangerous when you have kidney disease.
  • Maintain a healthy weight.
  • Be as active as possible. Exercise can lower high blood pressure, which helps your heart and kidneys.
  • Consult a renal dietitian and follow a kidney-friendly diet based on your individual needs.
  • Do not smoke.
  • Limit or avoid drinking alcohol.

Summary

Open lines of communication with your doctors, nurses and renal dietitian will help maintain your health and allow you to take control of your kidney disease treatment. Becoming informed about your medical condition and options will allow you to maintain a healthy, happy life. It’s simpler than you think to become the head of your kidney disease health care team.

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