Preparing for Kidney Failure

You have advanced chronic kidney disease, or CKD. This means that your kidneys have lost a significant amount of their ability to remove waste and extra fluid from your body.

Advanced CKD does not always mean that you need dialysis immediately. However, it is important to learn about your options and begin preparing before kidney function worsens.

What do the kidneys normally do?

Healthy kidneys:

• Remove waste products from the blood
• Remove extra salt and fluid
• Help control blood pressure
• Balance potassium, acid and other minerals
• Help your body make red blood cells
• Help maintain healthy bones

As kidney function declines, waste and fluid can build up, and complications such as anemia, high potassium, swelling, acidosis and bone disease may develop.

What is kidney failure?

Kidney failure is the most advanced stage of CKD. It is also called:

• Stage 5 CKD
• End-stage kidney disease, or ESKD
• End-stage renal disease, or ESRD

Stage 5 CKD is generally associated with an estimated glomerular filtration rate, or eGFR, below 15. However, the decision to begin dialysis is not based on the eGFR alone. Your symptoms, laboratory results, fluid balance, nutrition, overall health and quality of life are also considered.

Symptoms of advanced kidney disease

Some people have few symptoms even when their kidney function is very low. Others may experience:

• Increasing tiredness or weakness
• Poor appetite or unintended weight loss
• Nausea, vomiting or a metallic taste
• Persistent itching
• Difficulty concentrating or confusion
• Trouble sleeping
• Muscle cramps
• Swelling of the feet, ankles, legs or face
• Shortness of breath
• Producing less urine
• Difficulty controlling blood pressure

Tell your kidney care team about any new or worsening symptoms.

When might dialysis be needed?

Dialysis may be recommended when your kidneys can no longer adequately control waste, potassium, acid or fluid levels, or when kidney failure is causing significant symptoms.

Reasons to consider starting dialysis may include:

• Shortness of breath or swelling caused by excess fluid
• Potassium that remains dangerously high despite treatment
• Persistent nausea, vomiting or loss of appetite
• Malnutrition or ongoing weight loss
• Severe itching, weakness, confusion or other symptoms from waste buildup
• Acid buildup that cannot be adequately controlled
• Other complications that cannot be safely managed with medication and diet

There is no single eGFR number at which everyone must begin dialysis. The decision should be made together with your nephrologist based on your individual condition and goals.

Your treatment choices

There are four main approaches to the treatment of kidney failure:

• Kidney transplantation
• Peritoneal dialysis
• Hemodialysis
• Conservative kidney management

Learning about these options early gives you time to choose the treatment that best fits your health, daily routine, family responsibilities and personal priorities.

Kidney transplantation

A kidney transplant places a healthy kidney from a living or deceased donor into your body.

A transplant may provide:

• Greater independence
• Fewer dietary and fluid restrictions
• More energy
• Freedom from regular dialysis treatments
• Better long-term health for many eligible patients

A transplant is a treatment, not a cure. After transplantation, you must take anti-rejection medications every day and attend regular medical and laboratory appointments.

Do not wait until dialysis starts. Ask your nephrologist whether you should be referred for a transplant evaluation. Evaluation can often begin before dialysis is needed.

A living donor may be:

• A family member
• A spouse or partner
• A friend
• Another medically suitable volunteer

A living donor does not have to be biologically related to you.

Peritoneal dialysis

Peritoneal dialysis, or PD, is usually performed at home. It uses the natural lining inside your abdomen, called the peritoneum, to remove waste and extra fluid.

A surgeon places a soft catheter into your abdomen before treatment begins.

Common forms of PD

Automated peritoneal dialysis

• Usually performed at night while you sleep
• Uses a machine called a cycler
• Treatments are generally performed every night

Continuous ambulatory peritoneal dialysis

• Does not require a machine
• Fluid exchanges are performed by hand
• Several exchanges are usually completed throughout the day

Possible advantages

• Treatment at home
• Greater scheduling flexibility
• No needles for routine treatments
• More continuous and gentle removal of fluid
• Easier travel for some patients
• May better preserve remaining kidney function

Important responsibilities

You must:

• Perform treatment according to the prescribed schedule
• Maintain a clean treatment environment
• Learn sterile technique
• Store dialysis supplies
• Watch for signs of infection

Cloudy dialysis fluid, abdominal pain or fever may indicate an abdominal infection called peritonitis and should be reported immediately.

Hemodialysis

Hemodialysis, or HD, circulates your blood through a filter in a dialysis machine. The filter removes waste and extra fluid before the blood is returned to your body.

Hemodialysis can be performed:

• At a dialysis center
• At home with appropriate training and support

In-center hemodialysis is commonly performed three times per week, but the exact schedule depends on your treatment plan.

Preparing for hemodialysis access

Hemodialysis requires a reliable way to reach your bloodstream. This is called a vascular access.

Arteriovenous fistula

A fistula is created by surgically connecting an artery to a vein, usually in the arm.

Advantages may include:

• Lower infection risk
• Better blood flow
• Longer useful life
• Fewer complications than a dialysis catheter

A fistula needs time to develop before it can be used. This is why access planning should begin before dialysis is urgently needed.

Arteriovenous graft

A graft uses a soft artificial tube to connect an artery and vein. It may be used when a patient’s veins are not suitable for a fistula.

Dialysis catheter

A catheter is a tube placed into a large vein, usually in the neck or upper chest. It can be used immediately but has a higher risk of infection and other complications. It is generally preferable to begin planned hemodialysis with a working fistula or graft rather than a catheter whenever medically possible.

Protect your veins

When possible:

• Avoid blood draws from the arm being saved for dialysis access
• Avoid IV lines in that arm
• Avoid PICC lines unless your nephrologist approves them
• Avoid blood pressure measurements on an arm with a fistula or graft
• Tell hospital and emergency personnel that you have advanced CKD
• Ask your nephrologist which arm should be protected

Conservative kidney management

Some patients decide not to pursue dialysis or transplantation. This is called conservative kidney management.

Conservative management does not mean that medical care stops. Treatment focuses on:

• Controlling symptoms
• Maintaining comfort and function
• Managing swelling, anemia, nausea, itching and shortness of breath
• Medication and dietary management
• Emotional, social and spiritual support
• Advance-care planning
• Protecting quality of life

Dialysis may help many people live longer and feel better. For some patients with serious illnesses, frailty or limited functional ability, the burdens of dialysis may outweigh the expected benefits. This decision should be made after careful discussion with the patient, family and healthcare team.

What you can do now

Attend your kidney appointments

Regular appointments allow your kidney team to monitor:

• Kidney function
• Potassium
• Acid levels
• Anemia
• Calcium, phosphorus and parathyroid hormone
• Blood pressure
• Swelling and fluid balance
• Nutrition
• Medication safety

Complete laboratory testing when instructed, even when you feel well.

Know your medications

Bring an updated medication list to every visit.

Ask before taking:

• Ibuprofen, such as Advil® or Motrin®
• Naproxen, such as Aleve®
• Other NSAID pain medications
• Herbal products
• Dietary supplements
• Over-the-counter cold medications
• Salt substitutes

Medication doses may need to be adjusted as kidney function declines. Do not stop prescribed medications unless your healthcare provider instructs you to do so.

Follow your individualized kidney diet

Advanced CKD may require changes in sodium, potassium, phosphorus, protein and fluid intake. Your needs depend on your laboratory results and whether you have swelling, heart problems, diabetes or other conditions. Do not make severe dietary restrictions without discussing them with your healthcare team or kidney dietitian.

Sodium

Reducing sodium may help control blood pressure, thirst, swelling and shortness of breath. Limit highly processed foods, fast food, canned soups, processed meats and salty snacks.

Potassium

Potassium may become dangerously high in advanced CKD. Whether you need to limit potassium depends on your blood tests. Do not use potassium-containing salt substitutes unless approved by your healthcare provider.

Phosphorus

High phosphorus can contribute to itching, bone weakness and blood vessel damage. Your healthcare team may recommend limiting certain phosphorus-rich foods, avoiding packaged foods with phosphate additives, and taking phosphorus-binding medication with meals.

Protein

Your protein needs may change when dialysis begins. Before dialysis, avoiding excessive protein may be recommended for some patients. Once dialysis begins, patients often need more protein. Follow the specific advice provided by your kidney team.

Maintain your health

When medically appropriate:

• Stay physically active
• Control diabetes
• Monitor blood pressure
• Avoid tobacco
• Maintain dental care
• Receive recommended vaccinations
• Report infections promptly
• Keep an updated medication and allergy list

Ask your healthcare team which vaccines you should receive before dialysis or transplantation.

Emotional and family preparation

Feeling frightened, angry, overwhelmed or uncertain is normal.

Consider:

• Bringing a family member or trusted person to appointments
• Writing your questions down before each visit
• Meeting with a kidney educator or social worker
• Talking with patients who use different dialysis treatments
• Visiting a dialysis center
• Learning about home dialysis
• Discussing transplant and living donation
• Completing an advance directive
• Naming a healthcare decision-maker

You have treatment choices, and your preferences matter.

Call your kidney care team promptly if you develop

• Increasing nausea or vomiting
• A major decrease in appetite
• New confusion or extreme sleepiness
• Rapidly worsening swelling
• Increasing shortness of breath
• Much less urine than usual
• Rapid weight gain
• Severe or persistent itching
• Muscle weakness or abnormal heartbeat
• Difficulty taking your medications
• Persistent diarrhea, vomiting or dehydration

Seek emergency care or call 911 for

• Severe difficulty breathing
• Chest pain
• Fainting or loss of consciousness
• Severe confusion
• Sudden weakness or paralysis
• A very fast, slow or irregular heartbeat
• Uncontrolled bleeding
• Another life-threatening emergency