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Life with Chronic Kidney Disease

As a patient or care giver (family members and other loved ones who provide care and support), use these tips to manage relationship stress and keep the relationship positive. Life with CKD needs some extra attention on the relationship you share with you near and dear ones, especially with your family members.

Stay Active, Keep Your Job

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Try to keep your job, even if your kidneys get worse. You may be able to ask for short-term leave, a new schedule, or other small changes that would allow you to keep working. Read the daily paper, keep a journal, send letters to friends, listen to music, visit an art museum, or do any other activity that requires thinking. Staying involved in the world around you keeps your mind active. Keep working, seek out employment or go back to school. Even if it’s part time, this can be an activity you look forward to each week. Volunteer at an organization you find interesting. Consider volunteering to help children, the elderly or animals.

Take time for yourself and connect with people who provide you with positive feedback and support. Revisit things that have been uplifting to you in the past. Whether it’s rereading a favorite book, cooking a delicious dinner or calling a beloved friend you haven’t spoken to in awhile, treat yourself to something you enjoy; something that lifts your spirits.

Keep doing things that you enjoy like walking, dancing, exercising, gardening, or other hobbies that keep you active and involved in life. Before starting any exercise program, make sure that you talk to your healthcare provider. Start slowly and build up more each day. You will be surprised at what you can do.

Go out with friends, volunteer, or travel. And finally, don’t forget your everyday enjoyments. Whether this means going to the movies, attending concerts, reading a book or taking photos, and yes, sexual intimacy, be sure to live your treasured life. You’re a person, not a patient.

Expect to have feelings and reactions about your diagnosis of CKD

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  • Your feelings are normal and healthy.
  • They may range across anger, guilt, fear, disbelief, denial, or depression—and back again.
  • Feelings change from time to time.
  • Communicate with family, friends, and healthcare team.

You may experience some or all of these feelings. These feelings include anger that kidney disease has happened to you, or being discouraged that your body is somehow giving out much too soon. Most often these feelings are temporary. Talk over any symptoms with your healthcare team.

Depression has been called the common cold of mental health. That’s because it’s much more prevalent than people think. Anyone can suffer from depression—not just those with chronic kidney disease or who are on dialysis. Just because someone has kidney disease, or end stage renal failure, doesn’t mean they will experience depression.

The worst result of depression is that it robs a person of their happiness over a period of weeks, months or even years. More than feeling a little sad or out-of-sorts for a day or two, depression is an illness that should be treated by a professional in the same way you would treat diabetes or high blood pressure. Having depression in no way implies that a person has flaws in their character.

People with chronic kidney disease and their caregivers often suffer from depression due to the difficulty of adjusting to and coping with all the life changes that accompany both chronic kidney disease and end stage renal disease. If you are a patient or caregiver experiencing depression or are having difficulty adjusting, there is hope. Treatment and relief can come in many forms.

Learn how to recognize the signs of depression. It can mimic the symptoms of many other illnesses. Only a qualified professional can make a diagnosis based on the description of your symptoms.

Keep Communication Open

Talk to each other about your feelings. Are you feeling anxious? Resentful? Overwhelmed? Say what you are feeling. Listen to each other’s feelings and be sure to state your needs in clear, simple terms so that the other person does not have to guess what you need. Are you concerned about finances? Are you concerned about a change in treatment? Write down your list of questions and concerns. Talk about them with each other and make a plan to discuss them with your kidney doctor (nephrologist) or nurse. Other friends and family members may also have questions about CKD. Encourage them to ask any questions they have and make time to discuss these together.

Write up a Care Plan

When possible, the patient should take ownership of the majority of his or her treatment responsibilities. However, sharing in all the tasks associated with managing CKD as well as assisting at home with non-dialysis-related household tasks is essential. Write down who is responsible for each task and when the tasks need to be performed. Review this plan together from time to time and make adjustments as necessary. Be sure to write down any changes so that you can review these changes the next time you review your plan.

Spend Quality Time Together

It’s important to spend time focusing on the other aspects of your relationship aside from CKD to help your relationship stay healthy. Make time to pursue activities you enjoy together. Whether it’s going out to a movie or sporting event, planning a vacation or spending time at the park, it’s important to keep up with activities that don’t center on CKD. Make an effort to explore new interests together to keep your relationship strong.

Practice Respect and Appreciation

Coping with a chronic illness can be challenging at times. Treating each other with respect over the day-to-day details can go a long way towards helping you deal with issues that may arise over the course of your relationship or over the course of CKD.

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