By Cindy Elder

One of the frustrating aspects of kidney disease is the lack of control over the treatments and the progress of the disease. It's a formidable task for anyone to keep up with the dialysis and medication schedules, doctors' appointments and dietary restrictions. But like anything, once you understand the process, you start to become quite proficient at the job.

When I first learned that I had kidney disease and would have to begin dialysis, I was quite overwhelmed. After all, I was only 15 years old; I hardly knew what the kidneys were, much less what dialysis was. And, to be honest, for the first couple of months, I didn't want to know.

One day, as I was dialyzing at the clinic in Nashville, my doctor came by and, being in an unusually talkative mood, he told me that I was a part of the healthcare team, just as much as the doctors, nurses, dietitians and social workers. It was just as important that I do my part as it was for anyone else to do his or her part.

From that moment, I had a different perspective on the patient role in the process. After all, how could I expect my doctors to be concerned about how I felt, if I didn't appear to care?

As a patient, it seems that I am pretty well involved already. Why not take it the extra step and become informed, so that I know what the healthcare team is doing and why. It is a lot easier to cooperate with all the requests that are made of me when I know the reasons behind them.

Reading scientific articles, for example, allows me to take a long view of my situation, a professional view, if you will, and thereby gain a broader understanding of my disease. That way, I can engage in a more meaningful dialogue with my healthcare team. When my doctor tells me I need to control my blood pressure, I understand that running a high pressure can cause other problems like heart disease or stroke. When my dietitian tells me to adjust my phosphorus intake, I understand that the correct phosphorus level is important for healthy bones.

The more my physician understands about me and my medical history, the better he or she is able to make decisions about my healthcare. After 27 years of hospitalizations, procedures and medications, I began to lose track of the details of my medical history. So, I made a list of all the significant medical events that I have experienced. And though the list is now eight pages long, I find it to be an invaluable tool whenever I need to see a new doctor.

Sometimes, reading medical journals isn't convenient, so for the quick answers, there is no one as knowledgeable as the home training nurse at my clinic. Whether it is a question of curiosity or a real problem, my nurses almost always know the answers.

I can't remember any dialysis nurse that I have had that wasn't knowledgeable and proactive in making sure I received the best possible care. I have a lot of respect for the dialysis nurses and perhaps because of my effort to cooperate, they seem to have a respect for me as well.

I try to come to the clinic visits prepared, with all the requested information and a list of my needs, whether it be prescriptions needed or a detailed description of any problem I might be having. That will cut down on the guesswork and help them make decisions that will ultimately help me.

My experience has shown that the dietitians for the dialysis or transplant clinics are more knowledgeable and creative than the dietitians in the hospitals. Perhaps it is because of the challenge of kidney disease and all its side effects. Diet plays a very direct role in how I feel, so I am always open to what the dietitian has to say about what might help. After all, I would much rather control a problem with diet than with medication.

I have talked to many kidney patients who complain about having to cut back on salt or fluids. I have seen some transplant patients sail way past their ideal weight. It just makes sense to me to follow the diet plan with the help of the dietitian. Otherwise, you pay a big price for a small pleasure.

Kidney patients are extraordinarily lucky to have social workers provided as part of their care. It can be very frustrating in the world of HMOs, Medicare and Medicaid. I certainly couldn't handle it alone. From my experience, a social worker can do her job best, if I keep her informed and let her know about potential problems before they threaten my stability.

After thinking about it, it seems that open communication with members of the healthcare team is the thing that keeps my relationship with them positive and useful. If they don't know what is going on with me, they will have more trouble finding solutions.

My health is a real serious business. Through knowledge, mutual respect and communication I can be a useful part of my healthcare team. I will demand excellence from my team by striving to be excellent as a patient.

Cindy Elder has lived with kidney disease since 1974. She has had two transplants and is currently on peritoneal dialysis. She lives in Maryville, Tennessee.

This article originally appeared in the March 2002 issue of aakpRENALIFE, Vol. 17, No. 5.

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