Patient’s Role in Chronic Kidney Disease Care

Perhaps you learned you have chronic kidney disease at a routine physical for work or at a checkup to monitor your diabetes or high blood pressure or at a kidney function screening. However you learned about it, the good news is that you found out you have it because the earlier you learn you have kidney disease, the more you and your renal team can do to maintain your kidney function to slow the progression or prevent kidney failure.

The word “chronic” in chronic kidney disease (CKD) means that CKD doesn’t go away and has been present for at least six months. While your health care team will do all they can to take care of you and help you feel your best, you will want to take an active role in your care. There are things you can do such as:

  • Do your homework and learn more about kidney disease.
  • Always be honest with your care team about what you are doing and not doing.
  • Follow your care plan as outlined by your doctor and care team.
  • Get regular checkups, and keep your follow up appointments.
  • Keep track of your medicines and take them faithfully as prescribed by your doctor.
  • Stay positive to help keep your life happy and full of the things you love.

Learn about chronic kidney disease

Learn all you can about CKD and treatments for kidney disease. Knowledge is power. Look for books, articles, videos or audio tapes about kidney disease. The internet can also be a great place to learn, just don’t believe everything you read. Some trustworthy sites include DaVita, Life Options Kidney School and the National Kidney Foundation (NKF).

In addition to researching on your own, ask your doctor questions. As you think of things that you want to know, jot them down and bring them with you when you go to the doctor for a check-up to get answers. Keep a kidney care notebook of everything you learn about CKD so you can go back and refer to it if you forget. Help your family to learn more, too. The more they know, the more they can support you. Being diagnosed with CKD can be scary at first, but learning all you can about the disease and treatment options can help you feel in control of your health and life.

In addition to learning information about CKD, learn the why behind what you are asked to do. Instead of blindly following your health care team’s recommendations, ask questions to learn why you are asked to do certain things. Seek out information by reading this website as well as other reputable websites. If you understand chronic kidney disease and the details about your health, you can work with your care team to decide on your CKD treatment. You are the one who knows yourself best and has the greatest stake in your good health.

A good way to learn more about CKD is to attend a Kidney Smart℠ education course. These educational classes are taught by medical professionals for people who have CKD and their friends and family members.

Be honest with your kidney care team

Your care team can help you cope with kidney disease and feel your best if you are honest with them. Tell them how you feel, what drugs you take (prescription, over-the-counter, herbs and street drugs) and if you are following your meal plan (if you have one). Write down questions you may have before each clinic visit to ask your care team. Put the answers in your notebook. Tell your team about any changes in your symptoms. You may have more than one doctor, and your doctors may not always be able to talk to each other. Tell each of them what you’ve talked about with your other doctors. Making sure that your health care team is fully informed makes it easier for them to care for you and help you feel the best you can.

In addition to keeping your current care team members informed, you may also want to consider seeing a nephrologist or a renal dietitian. These kidney care specialists can help you feel your best and live a full life with CKD.

Follow your kidney care plan

Your kidney care team will help by developing a personalized plan for you to take care of yourself and slow the progression of kidney failure. You may be asked to eat or limit certain types of food, take your medicines, monitor your blood pressure, get exercise and make healthy lifestyle choices such as stopping smoking. Once you’ve started your plan, report back on how you’re feeling. Talk things over with your healthcare team if you are having trouble sticking to your plan. Also, ask for copies of your lab tests and keep them in your kidney care notebook. Paying attention to your lab tests will help you see the effect that following your plan has on your health. Numbers that keep going up or down should raise a red flag for you and your care team, and you can work together to get them where they should be.

One way to actively monitor how your kidneys are doing is to track your glomerular filtration rate (GFR) to see what stage of kidney failure you are in. Your GFR is a loose approximation of the percent of kidney function you have (90 to 100 percent being normal). Ask your doctor for the result of your serum creatinine test, a blood test that measures the amount of waste in your blood. Once you have this number, you can plug it into DaVita’s GFR Calculator along with your age, gender and race to find and track your stage of kidney disease.  

Get regular check-ups in addition to following your kidney care plan

It is recommended that you get regular check-ups with your primary care doctor and possibly with your nephrologist. Also, yearly influenza vaccinations (and every five years, “pneumonia” vaccinations) will be very important. Routine cancer screenings such as breast exams, prostate checks and colonoscopies must not be overlooked. You still need to do the small things that keep you healthy such as brushing and flossing your teeth each day and seeing your dentist every six months. You may be asked by your primary doctor to see a cardiologist, since people with CKD are at a higher risk for heart problems. If you have diabetes, follow your diabetes care plan and get regular foot, eye and blood exams. Staying on top of all areas of your health will help you to feel better and ward off future health problems.

Take your medicines as prescribed

People with kidney problems are often required to take medications, and sometimes the list can get rather long. Keep an updated list of all your medicine, which should include the dosage and how often you need to take each one. It is a good idea to bring all of your medications in to doctor visits to ensure there is no confusion about what you are supposed to take. Filling a pillbox with your medicines at the beginning of each week may help you organize yourself better. Remember to get your medications refilled at least one week before the bottle is empty so that you never run out.

Have a good attitude about chronic kidney disease

People who enjoy a long life with kidney disease tend to be those who value themselves and enjoy life. No one is always happy, but you can make a habit of doing helpful things for yourself and others. A positive outlook will help you have a good life. Research shows that optimists live longer. An easy way to focus on the positive things in life is to make a gratitude list of all the things you are thankful for and then watch for something to be grateful for each day and add it to the list.

While chronic kidney disease may change your life, it doesn’t have to be a change for the worse. There are plenty of people with CKD and end stage renal disease (ESRD) who live full, happy lives and achieve more than they could ever dream. Reading inspirational profiles about people who are living with kidney disease is a good way to remind yourself that you can still live life to the fullest as long as you stay positive and believe in yourself.

Summary

Taking an active role in your CKD care can empower you to live your life to the fullest and help you feel better overall. Whether it’s staying on top of annual check-ups or doing your CKD research, you can get involved in your care. It’s your life and your health. Take an active role in your care.

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