Living with chronic kidney disease (CKD) can impact every area of your life—affecting your physical, mental, social, and financial wellbeing. Fortunately, there are a wide variety of organizations, support groups, financial aid programs, and other resources that can provide assistance and support so that you don’t have to navigate CKD on your own.*

How can CKD affect different aspects of my life?

Just as the different areas of your life are interrelated, the impacts that CKD can have on those areas are interrelated, as well.

Physically

In its mid- to late stages, CKD can cause such symptoms as:

• Back or flank pain and headaches
• Insomnia and fatigue
• Increased urge to urinate, especially at night
• Blood in your urine
• Swelling (edema) in your ankles, hands, feet, or face
• Muscle cramps
• Dry, itchy skin
• Loss of appetite
• Weight loss or gain

When CKD is caused by an underlying condition, such as diabetes or hypertension, you may experience additional symptoms. Treatments for all these conditions carry their own potential side effects.

Mentally

People living with a chronic disease are at an increased risk of both anxiety and depression. Not feeling good and/or not being able to do all the things you used to do—things which your friends and family members are still able to do—may lead to feelings of loneliness and isolation. Not knowing what your future holds may cause you to feel like you’re in a constant state of limbo. As you juggle multiple healthcare appointments, refilling prescriptions, and more, time and energy constraints on you, your family members, and even your colleagues can compound your stress.

Socially

Unlike a broken leg that is visible and temporary, CKD is chronic, progressive, largely hidden, and lifelong. Depending on the severity of your condition, your lifestyle and that of your family and caregivers will need to change. This can place a strain on your relationships, not only during the initial adjustment to a “new normal,” but also over time as roles and needs continue to change. 

Communication is vital, as are building self-care and respite care into your care plan for both you and your family. This can help avoid, or at least mitigate, caregiver burnout, compassion fatigue, and feelings of guilt for all concerned. 

Financially

Doctor appointments, lab tests, medications, hospital stays, and medical procedures can add up quickly. As kidney disease advances, many people find that they can no longer keep up with their work duties and need to find other employment that can accommodate any new limitations. 

If you’re not able to continue working at all, Social Security Disability Insurance (SSDI) can help, but it can take months for an application to be approved. This can place a significant strain on your financial resources. 

What help is available to help me deal with CKD?

Approximately 37 million adults in the U.S. live with some form of kidney disease. Local, regional, and national resources can help you with the following:

• Adjust to living with a chronic illness through emotional support
• Learn more about the disease and its symptoms and treatments
• Connect better with your family and friends through mutual understanding
• Mitigate and manage healthcare costs 

Available resources can include:

• Peer support groups: Interacting with people with deep knowledge of what you’re going through can provide much-needed emotional support on your CKD journey. Members often share innovative and effective ways to handle day-to-day activities and issues, as well as helpful ways to plan for special events. Shared experience is a great way to keep loneliness at bay.
• Family support groups: While some peer support groups welcome friends and family, too, there are specific groups that offer support for family and friends. Hearing and sharing stories from multiple perspectives can foster understanding and patience; it can help both patients and caregivers feel that they’re not alone.
• Financial assistance: Even if you have insurance, out-of-pocket costs associated with treatments can be formidable. Several organizations offer grants, scholarships, and other financial assistance programs that can help cover the costs of transplants, medications, and other necessities.

Specific organizations that can help 

The following organizations can assist in various ways to help both kidney disease patients and caregivers meet their needs:

• American Kidney Fund (AKF) 
• National Kidney Foundation (NKF)
• American Association of Kidney Patients (AAKP)
• American Transplant Foundation (ATF)
• National Alliance on Mental Illness (NAMI)

It’s important to understand the challenges that you and your family may face as your condition progresses. Learn as much as you can about the resources and help that are available to you, and don’t hesitate to take advantage of them.

*Lockett, E. (2021, Feb. 22). Finding Support When Living with Chronic Kidney Disease. Healthline. https://www.healthline.com/health/kidney-disease/support-for-chronic-kidney-disease