If you have been told that you or a loved one has end-stage kidney disease, you may have many questions. Understanding kidney disease, what symptoms are present during the final stages and what this means for your treatment options can help you choose the best care and ensure the highest quality of life.
Understanding End-Stage Renal Disease
Chronic renal disease, or chronic kidney disease (CKD), has five stages. If you have been diagnosed, it means that your kidneys aren’t working properly to help filter waste from the body. CKD develops slowly over time and must be present for more than three months to be diagnosed.
By measuring two different tests, the estimated glomerular filtration rate (eGFR) and urine albumin-creatinine ratio (uACR), your doctor can identify which stage of CKD you are in. An eGFR of 60 or higher is in the normal range. With CKD the eGFR levels change as the disease progresses. End-stage renal disease, or Stage 5 CKD, is diagnosed when the eGFR is 15 or less for more than three months. This shows your kidneys are failing.
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Around 808,000 people in the United States have end-stage kidney disease. At this final stage, care options may include kidney transplant, dialysis, palliative care and hospice care.
Stages of Chronic Kidney Disease
The progression to end-stage kidney disease can be very gradual. A person can live with chronic kidney disease for many years before reaching the final stages, especially if they receive proper treatment early.
These are the four stages of CKD, before end-stage kidney disease, or Stage 5 develops:
Stage 1
eGFR >90
At this stage, kidney damage is mild. There may be no symptoms of the disease. Laboratory tests are abnormal and there is protein in the urine. Early treatment during this first stage can help keep your kidneys functioning longer.
Stage 2
eGFR 60-89
With Stage 2 CKD, you must have signs of ongoing kidney damage for at least three months. There will be more changes in lab results. Evidence of kidney damage includes abnormal uACR results, problems with urinary tract infections (UTIs) or blood in the urine or abnormal imaging (ultrasound, MRI, or CT scan).
Stage 3
eGFR 30-59
In Stage 3 CKD common symptoms of kidney disease appear. These include dark-colored urine, back pain, fatigue, swelling and changes to frequency of urination.
Stage 4
eGFR 15-29
At this stage, the person is at highest risk of developing end-stage kidney disease. Other health problems can develop, such as anemia, hyperkalemia (high potassium), metabolic acidosis (an increase in acidity in the body) and calcium and phosphorus buildup that affects bones and the heart.
Symptoms of End-Stage Kidney Disease
eGFR ≤ 15
There are several symptoms you may see when the person has end-stage kidney disease. When these symptoms are present, it is important to discuss these symptoms with your healthcare provider right away.
Common Symptoms
- Feeling weak and tired
- Making either very little or no urine
- Headaches
- Lower back pain
- Swelling in your arms, hands, legs, or feet
- Dry, itchy skin
- Muscle cramps
- Feeling sick to your stomach or throwing up
- Decreased appetite
Advanced Symptoms
- Confusion or delirium
- Trouble breathing
- Chest pain
- Seizures
- Coma
- Death
Causes and Risk Factors for End-Stage Kidney Disease
Developing chronic kidney disease and eventually progressing to end-stage renal disease can happen for many different reasons. Reasons may be physical, environmental, or social. These include:
- Chronic high blood pressure
- Diabetes
- Obesity
- Heart disease or heart failure
- History of acute kidney injury
- Smoking and tobacco use
Risk factors that cannot be changed include:
- Gender (women are slightly more likely to develop CKD)
- Race (people of Black, Native American, Asian, or Hispanic heritage are more likely to develop CKD)
- Family history of CKD
- Age 60 or older
As many as 90% of those with CKD are not even aware they have it. It’s important to schedule regular visits with your doctor to screen for problems, especially if you have any of the risk factors mentioned above.
Care Options for End-Stage Kidney Disease
If you have been diagnosed with end-stage kidney disease, it’s important to address treatment options immediately. Without dialysis or transplant, end-stage kidney disease results in death within days to weeks. Your healthcare provider can help guide you through the right decision for you. The following are options for care:
Medical Treatments
Medical management of ESRD includes either dialysis or transplant. Dialysis mechanically filtrates the blood to remove waste products and excess fluid. This is the most common treatment. The average lifespan on dialysis is 5-10 years, although some people may live longer.
Dietary Recommendations
Your healthcare team can help with nutritional management if you have ESRD. General recommendations include restricting fluids and sodium intake and limiting potassium, phosphorus and protein intake.
Long-Term Care and Management
Another option for care with end-stage kidney disease is palliative care and/or, if your physician determines you are now terminally ill, hospice care.
Palliative care offers support with disease management, even if you are on dialysis or other treatments for ESRD. A palliative care team works with you to decide what goals of care are most important to you. Palliative care helps ensure you maintain a good quality of life with pain and symptom management.
Hospice care can be elected if your physician certifies you have six months or less to live because of your end-stage kidney disease. You may choose hospice care in place of dialysis or transplant, or you may choose hospice after many years on dialysis. Hospice can help you and your family maintain comfort at the end of life.
Opting for Hospice Care for End-Stage Kidney Disease
Each person’s experience with end-stage kidney disease will be a little different and depends on many factors. It is important to have discussions with your family and healthcare team as you progress through the stages of chronic kidney disease, especially as you make choices about managing the final stages of the illness.
If you are considering hospice as an option for managing end-stage kidney disease, you may have many questions. At Amedisys, our team is available to help you understand how hospice can benefit you and your family during the end-of-life journey and when it’s the right time for hospice. For more information, take our free assessment quiz or find a care center near you.
