Managing your Life with Kidney Failure

I.   Introduction

Managing Your Life With Kidney Failure is part of the People Like Us, Online series, produced by the National Kidney Foundation. The goal of this series is to tell you about kidney failure and its treatments and to help you make the best treatment choices. The other parts of the series are:

An Introduction to the Kidneys and Chronic Kidney Disease

Treating Kidney Failure With Hemodialysis

Treating Kidney Failure With Peritoneal Dialysis

Treating Kidney Failure With Transplantation

Treating Kidney Failure and Eating Healthy

As you read this material,, you’ll be introduced to some medical terms that may be new to you. You can click on these words and find their meaning in “Words You Need to Know” in Appendix C.

Two terms you’ll see used frequently throughout the book are chronic kidney disease and kidney failure. Chronic kidney disease is slow, progressive loss of kidney function caused by diseases like diabetes, high blood pressure, glomerulonephritis, polycystic kidney disease and others. Sometimes, chronic kidney disease may lead to complete kidney failure, which occurs when you have less than 15 percent of your kidney function left, and dialysis or a kidney transplant is necessary to stay alive.

It is our hope that you’ll use this series as a springboard for discussions with your doctor and other members of your health care team and with your family. The better informed patients and their families are, the better the outlook for successful long-term treatment and quality of life for patients.

In this handbook on managing your life with kidney failure, you’ll learn about:

If you have been recently diagnosed with chronic kidney disease or kidney failure, you may be feeling scared, angry and confused. These feelings are completely normal. Every year thousands of people find out that their kidneys are failing, and experience similar feelings. Here’s how some patients and family members expressed their feelings:

"It just crushed me when it first happened. This whole health and dialysis thing, it just totally crushed me. I was feeling so bad, I wanted to die. I wished I could just lie down somewhere and never wake up. I just wanted the whole thing to be over."

-- Chris

"My husband and I both went through denial. It was March when he saw the doctor and found out he had kidney failure. He was supposed to go back for a check-up in April, but he didn't call for another appointment until October or November--and I didn't encourage him to. He was feeling really bad the whole time. But we didn't do anything, because we couldn't believe it."

-- Barb and Charlie

Like Chris, Barb and Charlie, many kidney patients and their family members go through a period of depression or denial when they first learn of their condition. This isn't surprising. Kidney failure is not good news. It brings change and uncertainty into the lives of everyone it touches. Even if you've been sick for a long time and are relieved to learn that your illness has a name, you may still feel overwhelmed.

“Numb” is how some people describe their reaction. Then their minds begin racing with questions like the following:

Am I going to die?

How will my life change?

What kind of treatment should I choose?

Will the treatment hurt?

Will I have to give up all the foods and activities I love?

Can I continue to work?

How will I get to the treatment center?

How will I pay for my treatment?

Will my friends still like me?

Will my spouse still like me?

How do I explain this to my children?

Will I become a burden to my family?

Can I handle all this stress?

Will I ever get back to normal?

Sound Familiar?

Not only are you feeling anxious, but your family is also. They’ll wonder what effect your disease is going to have on their life and daily activities. They’ll wonder how to help you feel better or how they'll handle the demands of your treatment schedule. Your spouse will worry about the loss of income if you are the breadwinner and can't work. Members of your immediate family may initially resent the changes in their life, schedules and, at the same time, feel guilty because someone they love is suffering. If a kidney transplant is being discussed, your family members may have mixed feelings about offering a kidney for donation.

Whatever it is that you are thinking or feeling right now, it is probably normal. Given the challenges you're facing, you have a right to be worried, sad, anxious or angry. But there's no reason to feel hopeless. Remember:

Kidney failure may dent your life, but it doesn't have to destroy it.

The better you are at letting go of your losses and looking at the bright side of things, the sooner you'll accept your illness and begin to adjust. The sooner you adjust, the more successful your treatments will be, and the better you'll feel. The better you feel, the sooner your life will return to normal.

Managing Your Life With Kidney Failure aims to help you and your loved ones recognize and cope with the challenges of kidney failure. As thousands of other kidney patients and their family members have discovered, it is possible to survive a diagnosis of kidney failure. All you need is determination, education, a positive outlook and to follow the instructions of your doctor and the other members of your health care team.

As another kidney patient, Tom, found:

"The most startling thing about dialysis for me was that it wasn't half as bad as I thought it was going to be. I spent ten years of my life fearing it, only to learn when it started that it wasn't all that bad."

The road ahead of you is not straight and smooth, and, at times, you may feel like “you’ve had it” and want to quit. But if you can keep moving forward, step by step, you'll find that you and your family will make it through this emotional time.

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