UNDERSTANDING END-STAGE KIDNEY DISEASE
What Can You Expect in the Final Stages of Kidney Failure?
End-stage kidney disease is the final stage of chronic kidney disease. At this last stage, the kidneys are unable to work on their own, which means that a person either needs dialysis or a kidney transplant to stay alive. While a transplant is an ideal choice as it offers a cure, not everyone is a candidate for this surgery.
Even so, it’s critical to note that most people with chronic kidney disease do not end up needing dialysis.
This is because, with early care, a person can usually slow down the disease.
If you or a loved one are in the final stages of kidney disease, what can you expect, and what is it like to die from renal failure?
Definition of Chronic Kidney Disease
Your kidneys filter waste and water out of your bloodstream. When your kidney function declines, waste accumulates in the body, and this waste buildup can eventually lead to symptoms like severe nausea and vomiting, loss of appetite, and feeling sick and weak overall.
A loss of normal kidney function may occur suddenly (called acute kidney disease) or over a period of three or more months (called chronic kidney disease). Acute kidney disease has the potential to reverse itself. But in chronic kidney disease, kidney function gradually worsens with time.
There are five stages of chronic kidney disease, with the fifth stage representing end-stage kidney disease.
In other words, without a lifesaving measure like dialysis or a kidney transplant, a person would die within a week or so.
It’s important to note that a person’s kidney function tends to slowly get worse, although the rate at which kidney function declines and transitions from one stage to the next depends on many factors (for example, the underlying health condition that caused the kidney disease in the first place).
It can take many years or decades for renal failure to progress to the final stage of the disease.
There are many different causes of chronic kidney disease; the two most common are diabetes and high blood pressure.
Other causes include:
- Lupus (systemic lupus erythematosus)
- Nephrotic syndrome
- Polycystic kidney disease
- Repeated urinary tract infections
- Prolonged blockage of the urinary tract (for example, from a tumour or an enlarged prostate gland in men)
It’s important for a doctor to diagnose the “why” behind your kidney disease because he may be able to slow your disease down. For example, if high blood pressure is the culprit, then your doctor may be more aggressive with monitoring your blood pressure and keeping it within a normal range. Likewise, careful management of your blood sugars if you are diabetic, may slow the decline of your kidneys.
There are a number of tests that a doctor may perform to properly diagnosis your chronic kidney disease, and some of these tests (for example, blood tests) will be repeated many times, even as you progress to the final stage.
Examples of tests that your doctor will perform to diagnosis and monitor your kidney function include:
- Blood tests that measure your kidney function (for example, BUN and creatinine level) and electrolyte levels (for example, your potassium level)
- Urine tests
- Ultrasound of your kidney
- Biopsy of your kidney (a procedure in which a small tissue sample is taken of your kidney and examined under a microscope)
- CT scan of your kidneys
Your doctor will also want to determine your glomerular filtration rate (GFR). This number allows your doctor to best understand your kidney function and determine the stage of your disease. The GFR is easily calculated using your blood creatinine level, age, gender, and race.
While some of these tests are initially ordered by an internist or family medicine doctor, a person with chronic kidney disease is eventually referred to a kidney specialist called a nephrologist, especially as he progresses to later stages.
In fact, studies have found that those who are referred to a nephrologist often live longer than those who do not see a specialist.
A nephrologist can follow your kidney function carefully and discuss a treatment plan with you if your kidneys fail. She can also monitor any complications that arise as a result of your kidney disease, such as anaemia or bone disease.
Just as the progression of chronic kidney disease is variable, so are the associated symptoms. In addition, the timing at which a person begins to experience symptoms of his or her kidney disease is not cut and dry. In fact, many people feel relatively OK until their disease is advanced. This is one reason to see your doctor regularly for blood tests.
Some of the symptoms a person may experience in chronic kidney disease, especially as it advances towards the final stage, include:
Loss of Energy
The first thing you might notice is feeling more sleepy or tired than usual. Your sleeping patterns might change. You might sleep more during the day or have difficulty sleeping at night. The fatigue associated with kidney failure is different than ordinary tiredness. You may feel tired despite a good night of sleep or a cup of coffee.
You might notice mild confusion or problems concentrating early on that might progress to disorientation, anxiety, irritability, or even delirium. When a person develops severe waste buildup from kidney failure, seizures and coma may occur.
Restless legs, burning feet, or other sensory problems may develop as a result of a significant waste buildup in the body. In fact, when this happens, it can be a sign that dialysis is urgently needed.
As minerals build up in the blood, you might notice muscle twitching or cramps, especially at night.
The build-up of a chemical called urea in the blood may cause your skin to itch, and you might even develop a fine white powder on your skin. Itching can usually be controlled with topical creams or antihistamines, such as Benadryl (diphenhydramine).
Appetite and Weight Changes
Your appetite will decrease, and you might lose weight. Alternatively, you might gain weight as your body retains extra fluid.
If you are not producing much urine but still drinking fluids, you might notice that your feet, legs, and ankles swell, which is called edema.
Malnutrition in chronic kidney disease is a major problem, which is why people will often follow a special diet to optimize their nutritional status.
Changes in Urination
You might pass little or no urine at all. If this is the case for you, limiting the amount of fluid you drink might improve your comfort level by decreasing the amount of excess fluid in your body.
Others may experience changes in their pattern of urination like urinating more, losing control of their urine (called incontinence), or developing more urinary tract infections.
Women often develop menstrual and fertility problems in chronic kidney disease whereas men develop erectile dysfunction. In addition, most women who reach end-stage kidney disease stop having periods.
The build-up of acids in the blood might cause changes in breathing, such as breathing faster and more shallow, but these changes are generally not uncomfortable. However, fluid can build up in the lungs and chest wall causing shortness of breath and chest pain.
There are other health issues associated with chronic kidney diseases such as a low blood count, low platelets (which help clot your blood and can lead to easy bruising), bone problems, malnutrition, fluid shifts, and electrolyte abnormalities. Breath odor, vomiting, and challenging hiccups may also occur.
Treatment of your chronic kidney disease depends on the functioning of your individual kidneys. For instance, a person in a lower stage of chronic kidney disease may be able to take a diuretic to urinate out excess fluid. On the other hand, a person with end-stage kidney disease who makes no urine needs dialysis to remove excess fluid from the body.
Your doctor will also treat any complications related to your kidney disease. For example, you may need medication for anaemia or a drug to prevent bone loss.
Final Stages of Kidney Disease for Loved Ones
People can sometimes live many years with the help of dialysis. Yet, without dialysis, or if a person chooses to forego dialysis, death often occurs within a few weeks. As toxins build up in the blood (which is called uraemia), a person will begin to sleep most of the day. She may see things that aren’t there, or talk about speaking with people who have died in the past. Her skin may become mottled, and she will lose all sense of hunger. The sense of thirst may also disappear, although kidney failure can often cause excessive thirst. As she gets closer to death, she may become very congested and develop irregular breathing (Cheyne-Stokes respiration). These symptoms may be very uncomfortable for loved ones, but do not appear to be uncomfortable for the person who is dying. As she nears death, she will probably slip into a coma. At this time, simply spending time with her is important. We’ve learned that the sense of hearing is the last sense to leave, so talking to her may be a great comfort.
When compared to people dying from cancer, those dying from end-stage kidney disease were found to have higher rates of hospitalization and fewer end of life instructions. It’s thought that people with stage 5 kidney disease could benefit from better palliative care and planning at the end of life. If your loved one is facing these last stages, talk to her doctor about palliative care and options such as hospice care.
A Word From Verywell
If you have chronic kidney disease, you may experience anxiety thinking about the future. Remain resilient and continue to work closely with your doctor. Careful monitoring and early detection of kidney disease are paramount in protecting your kidneys.
If you have end-stage kidney disease and are on dialysis or very close to starting dialysis, please be sure to discuss all your questions, worries, expectations, and goals of care with your doctor.
Whether you choose to have dialysis, or if not, talk to your doctor about palliative care. For people with cancer, this is often built into clinic visits, and a careful plan is made. With kidney failure, you may need to initiate this discussion to receive the best treatment and have the best quality of life with however much time you have left.
National Institute of Diabetes and Digestive and Kidney Diseases. What is Chronic Kidney Disease? https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/what-is-chronic-kidney-disease
Raghavan, D., and J. Holley. Conservative Care of the Elderly CKD Patient: A Practical Guide. Advances in Chronic Kidney Disease. 2016. 23(1):51-6.
Rosenberg, M. Overview of the Management of Chronic Kidney Disease in Adults.UpToDate. Updated 12/06/17.
Wachterman, M., Lipsitz, S., Lorenz, K., et al. End-of-Life Experience of Older Adults Dying of End-Stage Renal Disease: A Comparison With Cancer. Journal of Pain and Symptom Management. 2017. 54(6):789-797.