Answer: Quite simply, you don't.  There is no reason for you to have to learn anything at all about your illness.  You can follow whatever happens to you blindly.  This may seem a bit sarcastic, but that is your fate without knowledge.  Do you remember when you learned to drive an automobile?  At first, it was hard to keep the car between those little yellow lines.  It was as if the car was driving you.  As you became more knowledgeable and more skilled, you were able to direct the car in the direction you wanted it to go.  You can let kidney disease take you where it wants to go or you can learn how to direct your life despite its influence.

One of the good things knowledge will give you is the ability to take an active role in your healthcare.  The current concept of healthcare is based on its delivery by a team.  Whether you want to be or not, you are a part of that team.  Your decisions should be based on knowledge rather than fear or a whim.  My sister-in-law asks my three-year-old nephew where the family will go on vacation.  You and I both know a three-year-old does not have the knowledge or the ability to make such a decision.  The same idea applies when you are asked to give an answer about the use of a medication, the choice of a modality or to give consent for an operation. Without knowledge your choice is about as good as the three year old's choice to go to the moon for two weeks in August.   In order to exercise your right to take control of your care, your decisions must be based on facts.

You really need to know about your illness and its treatment for your own safety.  In this present complex world of medicine, there are many ways that people can make mistakes.  Many times I am helped when I make a mistake because a nurse, a pharmacist or a patient comes to me and says, "This doesn't look right."  I don't think I'm a bad physician and if I did things perfectly 99.9% of the time, there would still be an occasional error.  In order to protect yourself, you need to know what is happening to you and how you are supposed to be affected by your treatment.  You are the final checkpoint to prevent mistakes from happening.

It is important for kidney patients to take care of each other.  I don't know how many times I have heard good-intentioned patients telling something completely wrong to another patient.  Without the real facts, we torture ourselves with rumors and half-truths that we spread to each other.  There is no reason for this.  We need to take new patients into our family to teach them and to help them.  In order to do this, we have to know what is true and what is not.

You need to learn about your illness in order to help your healthcare providers too.  You are the only one who knows what is wrong with you, where you hurt and what you are feeling.  If I tell my doctor, "I don't feel right, something is wrong and you need to help me," even though I am a doctor too, all I will get in return is a blank stare.  On the other hand if I say, "My feet are numb, my hands are shaking, you need to check my cyclosporine level," he says, "Of course" and does exactly what I want.  Knowledge will help you understand your symptoms and be able to communicate them effectively.

There is no good without some bad.  There is no benefit without some risk.  As you gain knowledge, you will find it has a dark side.  It causes your mind to play tricks on you.  You will begin to wonder if you have all the listed side effects of a new medication.  When you find out all of the things that could possibly happen to you during your next declot procedure, you won't sleep a wink the night before.  If you search for an exact answer, you will never find one.  As your knowledge grows, you will realize medicine is a world of grays, not black and white.

What was true yesterday is not true today.  The standard of care today will be outdated tomorrow.  Another problem is applying knowledge derived from groups and studies to you.  You are an individual, not necessarily part of the 95 percent who respond to a new medication.  And lastly, commercial pressures and poor study designs often taint the information you find even when it comes from respectable sources.

The answer to your question is:  no, you don't have to learn about your kidney disease.  You can give up control of your life and let the illness take over.  I do not recommend that course.  Learning about your illness will give you back the control in your life that we have all lost.  With knowledge, you can exercise your rights as a patient effectively and receive the best possible care.

Answer provided by Paul McGinnis, M.D. Dr. McGinnis is a practicing psychiatrist at Mississippi State Hospital. He is a member of the AAKP Board of Directors and has a kidney transplant.

The Dear Doctor column provides readers with an opportunity to submit renal related health questions to healthcare professionals who specialize in the area of concern. The answers are not to be construed as a diagnosis and therefore, altercations in current healthcare should not occur until the patient's physician is consulted.

This article originally appeared in aakpRENALIFE, Volume 16 Number 2, Special Edition 2000.

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