Preparing for End-Stage Kidney Disease

End-stage kidney disease (ESKD) is when your kidneys are barely working or have stopped working. This condition is also called kidney failure. If you have kidney failure, you will need to be on dialysis or have a kidney transplant to stay alive.¹

Many rare kidney diseases are lifelong conditions that get worse over time. Treatment can help manage the conditions and their symptoms, but most have no cure. The more you know about your options ahead of time, the better you can plan for your future.^1,2

Symptoms of end-stage kidney disease

Your kidneys are responsible for filtering extra water and waste from your blood. They also:¹

• Balance hormones that help to manage blood pressure
• Make a hormone that helps create red blood cells
• Balance specific minerals like calcium, phosphorus, and potassium in your blood
• Keep your bones strong

When your kidneys are not working as they should, other organs and parts of your body are affected. This can take a serious toll on your body. But you might not feel the symptoms right away. Instead, symptoms may gradually get worse over time.¹

As you start to enter ESKD, you might experience the following symptoms:¹

• Swelling in the legs, ankles, or feet
• Headaches
• Itchy skin
• Fatigue
• Weakness
• Difficulty sleeping at night
• Peeing very little
• Losing weight
• Nausea and lack of appetite
• Muscle cramps
• Pain or stiffness in your joints
• Confusion
• Brain fog
• Memory problems

Treatment options

There are 3 options for treating ESKD:^1,2

• Dialysis
• Kidney transplant
• Conservative management and palliative care

Dialysis

Dialysis is a treatment that uses a machine to do the work of your kidneys. The machine filters out the excess fluids and waste from your blood.^2,3

There are 2 types of dialysis:^1,3

• Hemodialysis – You are connected to a machine that cleans your blood. Hemodialysis takes about 2 to 4 hours. It can be done at a treatment center a few times a week or in your home more often.
• Peritoneal dialysis (PD) – A fluid is put in your belly via a thin tube (catheter). This fluid cleans your body. It stays in for a few hours and is then drained through the same catheter. PD can be done in your home and is usually done every day.

There are pros and cons to both types of dialysis. Which method you choose depends on your overall health, medical needs, and lifestyle. Talk with your doctor to decide which dialysis treatment is right for you.³

Kidney transplant

A kidney transplant is a surgery that places a healthy kidney from a donor into your body. This donated kidney may come from a person who has died (deceased donor) or a person who is still alive (living donor).^2,4

While a transplant does not cure you of your rare kidney disease, it is often the best treatment option for people with ESKD. A kidney transplant can give you more energy, strength, and freedom. It can also help you live a longer life.^1,3,4

Talk to your doctor if you are interested in a kidney transplant. They can direct you to a transplant center, where you will be evaluated to see if you are a good candidate. You may need to join a waiting list for a new kidney, so have this conversation as soon as possible.⁴

Conservative management and palliative care

Some people may choose not to be on dialysis or have a kidney transplant. In the absence of these life-saving options, treatment is called conservative management or palliative care.^1,2

With this type of supportive care, you will take certain medicines that help manage symptoms and allow you to do some activities. Your doctor may also recommend that you eat a kidney-friendly diet to prolong your existing kidney function for as long as possible.^1,2,5

Conservative management and palliative care do not actively treat kidney disease. Rather, the goal is to keep you comfortable and healthy for as long as possible. Talk to your doctor about what you can expect from conservative management.^5,6

Choosing the treatment that is right for you

Kidney failure resulting from a rare kidney disease requires a lot of treatment decisions. While kidney disease treatment can help you feel better and live longer, each person’s treatment journey will be different. Talk with your doctor and transplant team about your options and what is right for you.¹