For Every 12 minutes, more than 100 times a day, someone in the U.S. is told they have “end-stage renal disease.”
Many of these new patients will fear that end-stage renal disease (ESRD) will mean the end stage of their lives. A few may even allow the illness to destroy their hopes and dreams. Other patients, though, will keep doing the things that are most important to them – like working, traveling, exercising, doing hobbies, and remaining active in family and community life.
How much will your life change? That depends a lot on you. There are countless patients who look at dialysis as a quiet time to read or relax, and then go back to doing all the things they did before. It’s up to you how much you want to keep your life the way it has been.
It is very normal to be afraid at first, and worried about how your life will change. You’re not alone. There are many, many people who can help you. Your dialysis team (doctor, nurse, dietitian, social worker and technician) is a good source of advice and help about rehabilitation.
Rehabilitation means restoring you to stable health, a positive outlook, and activities you enjoy. Why do you need rehab? To help you feel better both physically and mentally, and live your life to the fullest.
Recent breakthroughs in medicine and technology have made treatment for kidney failure more effective. Some of these advances include new medicines and more efficient equipment. This means that now more than ever before, kidney patients have the potential to return to an active and productive life.
The Life Options Advisory Council – a group of doctors, nurses, administrators, social workers, patients, researchers, and others – has been working on renal rehabilitation. They wrote a report called Bridging the Barriers, to help focus national attention on rehabilitation issues.
This booklet brings you key points from that report. It was written with patients and their families in mind.
Rehabilitation for kidney patients means a coordinated program of:
Some key rehabilitation goals for patients with kidney failure include:
Ask yourself, “What is my dream?” It may help to write down your major goals. Break them down into action steps. And put the list where you can see it every day.
Kidney failure affects people of every age, race, and walk of life. Yet, as a group, the nearly 200,000 renal patients are somewhat different from the whole U.S. population. Here are some interesting facts:
You need to know that if you leave school or your job, it may be hard to return. As a dialysis patient, it’s important that your treatment team (doctor, nurse, social worker, etc.) continuously look at how you can work together to improve your ability to work. This will help ensure the right rehabilitation efforts for you.
The obstacles we talked about are challenges for many patients. To help patients overcome these barriers and live better lives, the Council has named five “bridges,” or five “E’s:”
Evaluation. Research is being done all across the country on ways to support rehabilitation, and to help you live a fuller life.
All patients and their families need ongoing education. When it’s possible, you can even start learning what to expect beforeyou begin dialysis. It’s a real plus to know the facts about your disease, types of treatment, diet, and what to expect in your personal and family life. Education and better physical fitness are rehabilitation goals for all patients with kidney failure.
If you’re a new kidney patient, you probably don’t know what to expect from life on dialysis. If you’ve been on dialysis for a while, you may wish that you had known some things a lot earlier. Many obstacles to rehabilitation, like poor attitudes, not enough information, and lack of exercise can be overcome if you learn about them early and know what to do.
Attitudes are veryimportant. At some point, you may meet people who have negative attitudes about kidney disease.
They may not support your desire to remain an active person. These feelings can be contagious and harmful. Feeling depressed or less than whole makes it very hard to look for a job, exercise, or even enjoy a favorite activity.
It is normal to be scared and depressed at first. It is normal to feel that your body let you down, and even to think, “Why me?” Learning all you can and talking to people will help you overcome those feelings. Kidney failure is only one fact about you. The rest of you is still the same.
Many people with renal disease who receive proper treatment can enjoy many of the same activities they enjoyed prior to their renal failure. The single most important thing you can do is decide that you will keep doing what you love – whatever that is.
Besides having a positive frame of mind, getting enough dialysis is also important to your well-being. Dialysis must do the work of your kidneys which normally worked 24 hours a day. Every minute of dialysis is important, and more is better. If you don’t get adequate dialysis, you won’t have the energy to do the things you enjoy. Ask your treatment team about your dialysis prescription.
Be an informed patient and healthcare consumer. Learn all you can and ask questions. Knowing about your disease and working together with your doctor allows you to take some control over your life with kidney disease.
Have you ever heard of “use it or lose it?” Patients with kidney failure don’t know what activities they can safely do so they do nothing and their muscles get weak. Then they feel tired, and they don’t want to do anything physical. It’s a cycle that you can prevent. Ask your doctor what activities you can do safely. You will probably be surprised to find out all that you can do. Exercise actually gives you energy. To keep your muscles strong and your energy up, stay active. If you were never active before, now is the best time to start.
The following pages explain how you can use the rehab “E’s” to make the most of life on dialysis.
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