By Eli A. Friedman, MD

WHAT YOUR DOCTOR NEEDS FROM YOU

As you prepare to meet a doctor for the first time, you correctly expect competence, privacy, availability, sensitivity and compassion, without long office waits, confusing mumbo jumbo and suggestions you cannot afford. You also want fast attention to the problem causing the visit. Should you have a chronic illness, such as kidney disease, you yearn for a treatment plan that is understandable, easy to do and permits continuation of your lifestyle. To accomplish this goal, your doctor needs your help as outlined in this article.

Before Meeting Your Doctor

To ease the first visit, try to:

1.  Collect needed documents. Bring your insurance card, all laboratory reports of blood and urine tests, as well as any special procedures such as thyroid or vitamin blood levels, radiology reports (scans, sonograms, CTs). In addition, bring special instructions detailing diet or regulation of known diseases, high or low blood pressure, anemia or diabetes.

2.  Write a list of all your medicines by name, dose and frequency. If you are confused, place your prescription bottles in a bag and bring them with you.

3.  Prepare a list of your current doctors by name and phone number to allow easy checking of who does what for you. This will prevent unnecessary repeats of tests.

4.  Decide whom the doctor may talk to about your illness and treatment progress. New federal regulations protect your privacy. This means that unless you say so, your doctor is not allowed to give reports to anyone, not even your family and especially not your employer.

5.  Prepare a family history, starting with your grandparents, writing down where they were born, age and cause of death, and instance of inherited diseases such as kidney disease, diabetes or deafness.

6.  Write your medical history. At what age did your disease begin? How was it first treated? Did you have a kidney biopsy (when, where, what was found)? Have you been evaluated by specialists (who, when, what they found and said)? Have you been treated for a psychiatric disorder (depression, psychosis, suicide attempt)? Have you had a problem with alcohol or drugs? Do you follow food “fads” or struggle with your weight? Have you tested positive for HIV?

7.  Consider the value of preparing “advanced directives.” These are specific instructions telling what you want done should you become unable to speak for yourself. For example, should you have a stroke with little chance of ever being able to care for yourself without a tube in your windpipe and continuous intravenous feeding, would you want dialysis to be started? In addition, if you die during an operation or from your disease, do you give permission to give “good” organs to others for transplant procedures (eyes, heart, lungs, liver, kidney, skin)?

8.  Be sure to tell your doctor about restrictions to your care that you impose, such as a vegetarian diet or no blood or blood product transfusion? Do religious constraints limit your behavior (seating by gender, no hand shaking, arms and legs covered, Halal meat)?

9.  If your major concern is kidney failure, tell the doctor the issues bothering you most. Are you confused about the difference between hemodialysis and peritoneal dialysis? Are you considering a kidney transplant but do not know how to tell your family you would like them to help you find a donor? Be clear as to why you have consulted this doctor. Is this for a “second opinion” before you return to your usual medical care, or are you considering a change in your doctor because you are unhappy with previous care or moved into a new neighborhood?

10. Have you used services of the American Association of Kidney Patients (AAKP)? Do you know what AAKP can do to make your life easier? Strongly consider joining AAKP today, it can make a difference, especially to learn that you are not alone.

Meeting Your Doctor

1.  Be clear about fees and extra charges (tests and consultations), and who pays for what. For example, the Renal Division at Downstate Medical Center in Brooklyn, NY, nephrologists must contend with more than 45 managed care plans, each with different fee structures and drug allowances.

2.  Tell the doctor the “truth.” If you tend not to take prescribed medications, make this clear so there is no mystery over why your blood sugar or blood pressure has not responded to treatment. If you know you will not follow a weight reduction diet, say so. There is no point in playing games.

3.  Do not leave the office without knowing how to call for further care, test results and emergencies. Carry a list of key phone numbers (night and weekend help, emergency room) with you.

4.  If you find the doctor “hard to talk to,” say so. If the problem continues, change doctors. You really have to establish a good relationship or there is no point in continuing. Remember, you are paying the doctor for service and you are free to go elsewhere. Ask yourself, “What did the doctor say?” “What am I supposed to do?” and “Am I in urgent trouble?”

5.  If the news is that you need treatment for kidney failure, have a plan including the type of therapy, where you will get it and what you must do now. Do not leave the office unless you understand what you have been told.

6.  Write down vital information and get clear instructions on what you are to do in follow through. Be able to identify each prescribed drug, why you are taking it and what the main side effects are. Be clear as to whether you are allowed to have a 30-day or 90-day prescription and have it in your hand before you leave.

Now, Take a deep breath.

You are not alone. AAKP stands ready to help. Call us. Write your questions to us. Keep in mind that things are getting better every day for the patient with kidney disease – that means you.

Dr. Friedman is Chief of the Division of Renal Disease for State University of New York, Health Science Center at Brooklyn. He serves as chair of the AAKP Medical Advisory Board and is an AAKP Life Member.

This article originally appeared in the December 2004 issue of Kidney Beginnings: The Magazine, Vol. 3, No. 4.

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