Frequently Asked Questions about Living with Chronic Kidney Disease

Dealing with kidney disease may be one of your life's greatest challenges. You need to cope with treatments, problems, and feelings you may never have had before. Northwest Kidney Centers staff are often asked the following questions by patients and their families. If you are concerned about your emotions, talk to one of our specially trained counselors or support staff. You do not have to face this difficult time alone! Many of our patients have felt they way you do now, and have gone on to live happy, useful lives while undergoing treatment for Chronic Kidney Disease.

We use the word "family" in this information to stand for any important emotional relationship you have such as the family that raised you, your husband or wife, your children, a partner, or a close friend.

I can’t believe I have Chronic Kidney Disease. Will this feeling ever go away?

It may be very hard to really believe that you have kidney failure and to learn to accept this fact. It is only natural to feel shocked by this news. This may be truer if you have not felt very sick or did not know in advance that you were losing your kidney function. Most people go through a period of disbelief or denial. These reactions can affect how well you follow your doctor's orders about treatment, medicines, and diet.

Why do I feel so angry all the time?

You may feel angry about having kidney failure and its effect on your life. You may dread the thought of another dialysis treatment or surgery. You might find yourself showing anger towards doctors, nurses, other staff, your family, and yourself. Anger in this situation is not unusual. You have a right to feel the way you do. Sharing your feelings can help you cope better and can help others understand how you feel. Most of our patients feel better once their treatment is underway and they start to feel better. Be sure to talk to a counselor, family member or spiritual advisor about how you are feeling. You have a right to your feelings. Talking about them often helps you to feel more in control of your emotions.

I just don’t feel very good anymore. Will this feeling of sadness get better?

At one time or another, every patient feels irritable, blue, nervous, or depressed. This reaction is very normal. Your life and health may feel somewhat out of control. You cannot avoid feeling frustrated when you are no longer able to do things that you used to do.

These unpleasant feelings can actually become another problem. It is hard to do things and to build a new life when you feel upset and depressed. Your social worker is trained to help you talk about and handle these feelings. Having someone to talk to can make a big difference. Many of our patients find that they have a renewed outlook on their lives and an increased sense of enthusiasm once they and their bodies get used to all the changes in their lives. Be sure to talk to one of our experienced counselors about what you are going through. You do not have to suffer alone!

I feel like my family just doesn’t understand what I am going through. Is this common?

You may have problems in your family. Your family has learned to relate to you in certain ways, but you may have gone through some changes. Because of kidney disease, you may be more listless, irritable, resentful, or physically weak. These changes may make it a problem for people close to you to talk with you and tell you what they really think. They also are affected by the fact you have kidney failure, and may have feelings of disbelief and anger. They can talk to the social worker as well. The staff at the Northwest Kidney Centers is here to support you and your family. Many issues can be resolved through openness and conversation as you and your loved ones become accustomed to all the changes in your lives.

I just don’t feel very good about myself since being diagnosed with CKD. Will this change?

Changes in your health, appearance, daily living, emotional and sexual relationships, and your own emotions all affect how you feel about yourself.

You may see yourself as "less of a person," or a mere number in a large health care system. You may have bad feelings about your body because of changes in the way you look and feel. You may think others do, too. Do people stare at your fistula and seem to "wonder" about the needle marks they see? Do people treat you differently because you have a serious health problem? Do you hate the thought of puffier cheeks and the possible weight gain that may result from transplant drugs?

These images and concerns can be hard to deal with. Yet, as the benefits of treatment and your efforts to improve your health take effect, a renewed sense of yourself can begin to grow. Adjustment depends a lot on a person's attitudes about limits and physical changes.

It is important to talk to dialysis and social work staff, and to be open in sharing your feelings and needs with loved ones. Support, your openness, and being willing to develop positive attitudes can all help you find a revitalized sense of self worth.

I feel less sexual than I used to. Is this normal?

Sexual problems or concerns are common for kidney patients. Both men and women feel less interested in sexual activity because of physical and emotional changes. Men may experience impotence (no erection) and women may have difficulty having an orgasm. Physical factors such as medicines, diet, anemia, lack of sleep, lack of enough dialysis, and changes in hormone balance may also play a part. Physical problems may cause your sexual concerns so talk with your doctor about them. This is especially true since medications continue to be developed that assist with sexually-related problems.

Several emotional factors also can contribute to these changes. Anxiety about your kidney disease and its treatment may have an effect. Your social worker can talk with you about your concerns, provide counseling for both partners, or refer you to other counseling services.

Your partner can be helpful by letting you know that you are attractive in many ways, not just physically. You also need to know that people love you for things such as your humor, intelligence, love, and talents.

I want to have a baby. Is this even possible anymore?

Having children can be difficult. Men may have a lower sperm count, and hormone changes in women make pregnancy less likely. Doctors do not advise that women with chronic kidney failure get pregnant, including pre-dialysis patients. The risks to both mother and baby are greater than normal. The chance of carrying a baby a full nine months is low. Women should talk to their doctor and seriously consider birth control. Some women have had babies after a successful transplant, but women need to carefully discuss the timing and risks. If you are considering having a baby, discussing your options with your physician will help you decide what the best plan is for your family and treatment.

Will I be able to keep working?

Your job is important because of the income and benefits it provides. It also helps you feel good about yourself. Sadly, kidney disease may affect your ability to do your current job. For example, your job may be too difficult or tiring. You may need to look at changes in your hours, job tasks, or the type of work you do. If you have not started working yet, you may find that certain jobs and careers are no longer choices for you. Many people on dialysis or with transplants are employed, and there are a large number of jobs that are choices for those with kidney failure.

What can I do to enjoy myself?

You may find yourself less interested in the things you used to do for enjoyment. This might be a good time to try something new, like knitting or scrap booking. Many people begin using computers as a way to research their condition and to meet other people in similar situations. Any limits on hobbies and activities depend on your form of treatment. Some activities may require more strength or stamina than you have. Even quiet activities like reading or watching TV can be less enjoyable because you may find it more difficult to concentrate. Still, many patients find themselves more able to get back to their regular activities after they get used to living with dialysis. Talk to your treatment team to for suggestions on activities appropriate for your treatment and state of mind.

I have no energy since my CKD diagnosis. Why should I exercise?

Regular physical activity and exercise are an important part of well being. It gives your body a chance to work the way it should. Benefits include:
• More oxygen going to the body.
• Relaxing from deep breathing.
• Help with sleeping problems.
• More strength and endurance.
• Better blood flow or circulation.
• Possible increase in the oxygen carrying capacity of red blood cells (hemoglobin).
• Improved appetite, digestion, and bowel function.
• Stronger lungs and heart (from aerobic exercise) that work more effectively and efficiently.

Activity can be a regular, planned exercise program such as those offered through health clubs, community centers, or a local "Y." You can also plan your own exercise program around such things as NKC’s Simplecize program, walking, swimming, aerobic exercise, rowing, and cycling. Dancing, gardening, golfing, or playing catch also help keep your body active and your life in good balance. For more information on exercising while on dialysis, read on (LINK to Living WELL)

Will I always feel so discouraged about my Chronic Kidney Disease?

You might feel discouraged after reading about these possible problems. You may already have had some of these. Most patients have a hard time at first. Usually within a few weeks or months of starting treatment, people feel better.

As you feel better, a good kind of "snowball" effect starts to take place. You'll feel more able to cope with your problems. You gain a new outlook and a more positive and accepting attitude. You can still expect to have times when you feel down and depressed, but usually these feelings happen less often and last for a shorter length of time.

Who can I ask for help making decisions?

The most important source of help is you. At some point, each person makes the decisions and takes the actions that lead to solving problems. However, it is not unusual to need help with both emotional and medical issues. The experienced staff at the Northwest Kidney Centers is always available to help you with any concerns you might have. Our Social Services Department helps patients and family members adjust to the changes and stresses created by chronic kidney failure and its treatments. Services are available to all NKC patients regardless of their treatment location or method (pre-dialysis, dialysis, or transplantation). We are available weekdays from 8 a.m. to 5 p.m. and we are on call for emergency situations. Call 206-292-2774.

All NKC social workers have a Masters degree in social work (MSW) and have training in psychology, crisis intervention, and counseling. Also, we offer special skills in helping people cope with medical problems and health care systems. All of our social workers are Registered Counselors through the Washington State Division of Professional Licensing.

Your family and loved ones are another important resource for you.
The following are some ideas of people you can call on for the care and support you need:

• Family
• Friends
• Health care staff
• Social worker
• Other patients and their families
• Spiritual counselor
• Mental health counselor