If you have advanced kidney disease, you need to receive regular dialysis treatments or a kidney transplant to help you live a better quality of life. If these options aren’t feasible or tolerable, you may choose how — or even if — you want to receive treatment. Without dialysis or a kidney transplant, however, once your kidney disease reaches Stage 5 (end stage renal disease), toxins build up in the body, and can cause death within a few weeks.
The decision to stop treatment should be informed and voluntary, and it’s important that you talk with your doctor and social worker to fully understand your choices. They will try to understand any issues that may affect how you feel about treatment, and will tell you about treatment options, including stopping (or not starting) dialysis and planning for your care.
You may receive palliative care, also called comfort care, which focuses on helping you stay as comfortable as possible.
Without dialysis, the toxins that healthy kidneys typically remove build up in your blood. As the toxins increase, you may experience certain physical and emotional changes. For example, you will find you have less energy, and you may feel sad or depressed. Here are some additional changes that may occur.
Cardiovascular: Anemia is a condition in which red blood cells are fewer or smaller than normal, which means less oxygen is carried to the body’s cells. Anemia can cause extreme fatigue and worsen existing heart problems.
You may have an increased risk of cardio-vascular problems such as blockage of blood to the heart and congestive heart failure.
Appetite: Your appetite can change, and you may eat less or not want to eat at all. Some people no longer want foods they once craved, and many feel sick at the thought of eating.
Skin: An imbalance of calcium and phosphorus in the blood can cause you to have itchy skin, usually on the back, chest, head, or limbs. Your doctor may prescribe medications to help you with this, and for some people, exposure to sunlight helps relieve the itching.
Bones and joints: Your bones may become weak, and you may also feel pain and stiffness in your joints due to amyloidosis, a condition in which an abnormal protein in the blood called amyloid is deposited in tissues and organs, including the joints and tendons.
Sleep: You may have trouble getting to sleep and staying asleep, which can be worse if you have sleep apnea syndrome related to the effects of advanced kidney failure on breathing. You can also experience aching, uncomfortable, jittery, or restless legs. Your doctor may prescribe medication to help, and some people find that massages or warm baths can help as well.
Remember, the decision to proceed with or stop dialysis is yours, and talking with your healthcare team about what to expect can help you make a better informed decision.
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