I Have Chronic Kidney Disease: Where To Go From Here

Getting diagnosed with CKD means getting comfortable with the changes it brings—and this may be a process that takes time. Breaking down a big change into smaller steps can make understanding what your diagnosis means for your life more manageable.

Need a starting point? Make a list of questions to ask your doctor and then make a to-do list of actions to take. As you get more informed and mark things off your list, you’ll be able to see the progress you’re making.

It’s important to recognize your feelings about CKD and find ways to work through them. Your journey of living with chronic kidney disease can begin with a range of emotions—grief, fear, denial, anger, depression and feeling overwhelmed—which are all perfectly normal reactions. One way to manage your feelings is to take back some control of your situation. Empower yourself through education, goal setting and getting support.

A key component to thriving with CKD is getting encouragement along the way. Reach out to family and friends and tell them what you’re experiencing—they’ll be an important part of your support network! Talk about how you’re feeling and keep your support network updated on any changes in your treatment, diet or medications. The more you share and communicate, the more your family and friends will be able to help you through any rough patches—and celebrate when you’re feeling good.

—Ron, on dialysis since March 2015

Eating a kidney-friendly diet will help your body stay its healthiest—without adding additional stress on your kidneys. In fact, what you eat now can have a direct impact on your current and future kidney health. Your doctor will refer you to a dietitian, who is an expert at kidney meal planning and will help you identify low-salt, low-protein foods to incorporate. Don’t worry about having a bland diet—there are many ways to keep meals interesting with recipes your whole family will enjoy.

One of the best things you can do for your physical and emotional health is to stay active and engaged in things you love—throughout every stage of CKD. If you have a job you love, stay with it. You can absolutely continue working, even during treatment for end stage renal disease (ESRD). In fact, there are laws in place that may protect the rights of people living with CKD or other conditions in the workplace.

As you consider treatments for stage 5 CKD, you’ll probably also start to think about associated costs. Now is a great time to research and plan ahead for how your treatments will be covered. If you’ve got health insurance coverage, don’t make any changes without reviewing all your options. Having a diagnosis of kidney failure down the line may make it difficult to get a new plan. There are also several options for financial assistance with treatment.

It may be challenging to think about preparing advance directives, such as power of attorney for healthcare, healthcare proxy or living will, but these are important steps to take in order to protect yourself and your loved ones. Many people being treated for CKD live long, vibrant lives—but legal decisions about end of life will still need to be made eventually, so give yourself time to think about your wishes, discuss them with your family and get legal consultation if necessary.