Kidney School™—a program of Medical Education Institute, Inc.

Module 5—Coping with Kidney Disease

The Red Room (Crisis)

The red room is a place that few people forget. It's the first stop for most people with kidney disease.

Your first visit here may have been when your doctor first told you your kidneys were failing, when you had to choose a form of treatment, or when dialysis or a transplant were needed. Some people enter this room slowly, others are whisked in by an emergency. No matter how you get here, it is a crisis.

Fear of the Unknown: The Common Thread of Crisis

People we have talked to have told us what it felt like to be in a crisis about kidney disease:

"Emotionally, it threw me into a terrible loop, because I had no clue what it meant. You know, am I going to live or die, and what's going to happen next?"

"I was scared. I was just... I didn't know what was going to happen to me."

"At the time, I felt of no use. I thought I was just going to die. I didn't know you could live with this."

"I had lost a leg and was already handicapped. Now I had to go and have surgery, limiting my life more than it was already limited."

"All I had ever heard [about dialysis] was horror stories. That's why it bothered me. But I was so sick at the time they put me on, I really didn't give a damn what they did, as long as I felt better. I was in the hospital and I went down, they put the access in, they gave me a treatment the same day, and I started to feel better."

"I did triathlons at the time, and [my doctor] said, 'You will never be able to do that again,' and I kind of took that like I wouldn't be able to walk at all. So that was kind of misleading and really shook me up. I just thought my whole body was going to deteriorate, and I'd be—I would die within a few months. It is a couple of years later now, and I'm fully functional. I mean, for the most part. I can't do triathlons, but I can walk or I can drive."

"I remember sitting with the most incredible terror. Four o'clock in the morning used to be the time when I'd wake up and worry about things. And the fear of dialysis..."

What do all of these people have in common? Fearing the unknown—and expecting the worst. Seeking information to help you learn what you can really expect may help you move beyond a crisis stage.

Red room

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