CKD can overwhelm a patient. There is new information to become aware of, a new treatment plan to begin. You will direct your energy to your treatment and physical well-being. It can be exhausting. But you must also take control of your mental state.
Living with kidney disease is not something you should go through alone. Nevertheless, family dynamics often change when one member has a chronic illness. The people closest to the patient are often emotionally affected. But it does not have to be a negative experience. Living with kidney disease often brings the family closer together, and over time family life can reach a new norm.
Many people form part of a support system: from family and friends; to healthcare professionals; to agencies that specialize in working with people who have kidney disease. Remember, you are not alone.
The impact on family life
A patient who needs dialysis for three days or nights a week in a center needs good time management to balance their dialysis schedule with other activities. That time-balancing act may well take a few weeks to adjust and figure out a new plan that works for you and your family.
Meal preparation for the patient and their families has to be adjusted as limits on potassium, phosphorus, salt, and fluids intake are often recommended for people with kidney disease. Some simple tips and ideas include using more spices and herbs in each meal in place of salt. Or try a "build your own" meal approach, where each family member can add ingredients to their plate.
The impact on the patient
How kidney disease feels physically
The symptoms of kidney disease may physically include the feeling of having flu all the time. Examples of how a person with kidney disease may feel:
Tiredness and weakness
They may feel tired and weak, so that it's hard for them to manage walking up a flight of stairs or take a walk around the block. They may feel the need to sleep more than they usually do.
Coldness and temperature
They may feel cold all the time as if they have a fever.
Lack of concentration and forgetfulness
They may have trouble concentrating or may forget things more than is usual for them. These symptoms are most often due to anemia, a shortage of red blood cells. Nephrologists can treat the anemia.
Other symptoms which sometimes occur
A person with kidney disease has kidneys that aren't removing fluid. So swelling may occur in the feet, ankles, hands, or face. So that sometimes they can't put shoes on. Extra fluid in the lungs can make it hard for them to breathe. And that difficult breathing may sometimes be mistaken for asthma or pneumonia.
Having too much fluid can strain the heart, especially in someone whose heart is already weak due to congestive heart failure or other problems.
Restless legs, insomnia, phosphorous itching
Many symptoms are often treatable. So talk with the doctor of the family member who needs care; the doctor can help you.
Your Emotions and Chronic Kidney Disease
Caring for your mental health is just as important as caring for your physical state. Recognizing emotions common to other patients with CKD can help you feel less isolated and get you the support you need.
Patients can tell their doctors what they are physically feeling: pain, fatigue, dizziness, etc. However, many people do not feel comfortable telling their healthcare team about what they are mentally feeling. Your psychological recovery is an essential part of managing CKD.
The following are common emotions patients experience when they have been initially diagnosed with a chronic illness, although these emotions can be present at any time during treatment.
Fear and Anxiety
Fear and anxiety are common emotions when you have been diagnosed with a chronic disease like CKD. Functioning kidneys are something you've taken for granted. Now, you are no longer in control of your renal process. You must rely on dialysis to do your kidneys' job. You will wonder how this disease will affect you. You may worry about its impact on how you care for and provide for your family.
Treatment for CKD sometimes compounds the anxiety. Whether you will undergo hemodialysis or peritoneal dialysis (PD), each requires surgery to create access. You need to choose if you will go to a clinic for dialysis or want the treatment at home.
You may worry about the disruption to your family life, especially if you opt for treatment at home. Will your loved ones adjust to seeing you attached to a machine? Will they dislike the constant reminder that you are not as healthy as you once were?
When something bad happens to us, we try to cope. We make decisions that can help us adjust or understand what has happened. But when the trauma is severe and threatens to overwhelm us, we sometimes deny anything has happened.
Although this occurs in extreme cases, this can happen if you have been diagnosed with a chronic illness. You may refuse to accept the fact you are ill, or if you do, you may refuse to believe you are seriously sick. Perhaps you do not believe the recommended medications and treatments are necessary.
Feelings of anger are common among CKD patients. We are mad that this has happened to us. We are angry at ourselves for allowing our health to deteriorate to this point. Sometimes we are furious at the medical community for not taking better care of us or not diagnosing the disease earlier.
Many patients direct this anger at their family members or spouse. Anger and resentment can build to the point where it strains the relationship between you, your health care team, and your family.
Feeling down is a normal part of chronic kidney disease. Lack of energy and nausea are common symptoms of CKD. But when we feel mentally down, we often feel sad our bodies are not functioning as they should.
We all go through ups and downs in life. But if these feelings develop into hopelessness, despondency, or despair and last over two weeks, you should tell your doctor. It may be a sign of depression. If you feel you do not wish to live any longer or have thoughts of ending your life, you must tell someone immediately.
How do I deal with all of this?
Education is key
Knowledge about chronic kidney disease and dialysis can help you become familiar with your illness and its treatment. You won't feel as fearful or anxious if you know what to expect.
Feeling calm can help you sort out things, and you'll be able to deal with your disease more effectively.
Feelings of denial are a severe problem in the long-term prognosis for your health. Listen carefully to your healthcare team and follow their recommendations. If you do not understand something, ASK QUESTIONS!
Anger can isolate and prevent you from seeking help or solace from people who care about your health. Although expressing your anger can help it diminish, it may lead to more frustration. Talking about why you are angry can help you determine its cause.
Talking to someone about your emotions is essential. Do not feel that you must find a way to deal with this by yourself. Most patients benefit from discussing their feelings with their healthcare team, family, friends, and other CKD patients.
Your nephrologist, nurse practitioner or social worker can refer you to a support group. A support group can help you put things in perspective. Reading about other people who lead active lives while on dialysis can be uplifting and give you hope.
Relationships and support
Be open about how you feel, and let your family and friends know what they can do to help. However, do not feel shy about telling them that you need some time to yourself if you need it.
Although there will be changes in your life related to kidney disease and treatment, life goes on.
Many people with chronic kidney disease have learned how to live their lives around dialysis treatments.
And there are many resources, both professional and patient sponsored, that can give you helpful and supportive information and assistance in dealing with many of the challenges facing a person with kidney disease.
You can return to work or continue your education while on dialysis. Your healthcare team can reassure you if you have questions about your CKD, or you may find it helpful to talk to a trained counselor, psychologist, or specialist telephone helpline operator.
Help is out there.