By Kris Robinson

The team approach concept to medicine, with the patient as leader, has evolved over thousands of years with the most apparent growth in just the last few decades. Many of our parents and grandparents can remember the time when the physician kept information from patients for the “good of the patient.” As early as the fourth century B.C., Hippocrates – known as the Father of Medicine – recommended “concealing most things from the patient while you are attending to him…revealing nothing of the patient’s future or present condition.” This concept continued even into the late 1800s when Oliver Wendell Holmes spoke to medical school graduates and cautioned, “Your patient has no more right to all the truth you know than he has to all the medicine in your saddlebags…He should give only so much as is good for him.”

In the 1960s, mainstream television depicted a nearly perfect physician – knowledgeable, caring and concerned – who directed the always respectful, trusting and grateful patients to the best healthcare available in the show “Marcus Welby, M.D.” Shows like “Medical Center,” with the dashing Dr. Joe Gannon, and “Emergency,” did little to develop the patient role into one of participator in healthcare. Can you recall any episode then, or even today, with shows like “ER,” where the patient whips out his personal health record stating his allergies, medications and recent blood test results and discusses them with the healthcare professional?

As individuals with chronic kidney disease (CKD), you can often have three or four doctors, if not more, that you visit annually. Each physician can easily prescribe up to three medications, sending you for a multitude of tests and suggest diets, exercises or much more. Who keeps track of all these test results, prescriptions and directions if not the patient?

Let’s take Linda as an example. Linda was recently diagnosed with CKD through a blood test prescribed by her endocrinologist because of type 2 diabetes. Her doctor sent her to a nephrologist who sent her for a kidney biopsy and prescribed blood pressure medication, along with her already prescribed insulin. She then visited a dietitian to learn about the importance of diet. Two days later she had her annual gynecology appointment where her birth control pills were renewed and then went for a mammogram and bone density test. Afterwards, she stopped by the pharmacy to pick up her skin ointment prescribed by the dermatologist. While there, she decided to purchase a new herbal medication a friend had recommended. When she returned home, she took her nightly walk because her family physician told her to watch her cholesterol. Linda also knows from a childhood experience that she is allergic to penicillin, and eggs cause her to swell up to the size of a house. But Linda has everything under control because she charts her healthcare and knows the status of all her medications, tests and allergies. She keeps two different health records. The first is an emergency card she keeps in an easy to identify place in her purse. The other is a notebook filled with information.

It is normal for patients to feel overwhelmed by their healthcare information. Starting a health journal can seem like too much work, difficult to do and unwieldy to manage. However, with the right tools, it could save your life.

The emergency information card is one of the most important items anyone can carry with them at all times. The card, which can easily be made on a computer, should contain your name, birth date, address, telephone number, medical conditions, medications and herbs taken – including amounts, allergies and emergency contacts. It should also include the name and contact information of your primary physician and/or specialists. Once folded to fit into a wallet, add “EMERGENCY INFORMATION” in bold writing to make it easily recognizable. See Linda’s card below.

Emergency Information

Name: Linda Brown

Address: 111 ABC Road

               Anywhere, USA

Telephone: 555-555-1212

DOB: 7/10/74

Conditions: Type 2 diabetic with chronic kidney disease (CKD)

Medications: Vasotec 5mg, Humulin R, Loestrin

Allergies: Penicillin, Eggs

Emergency Contacts: Tom Brown (brother) 555-555-3212

Physician: John Smith, MD, 555-555-4211

Your health notebook is a way to keep current and historical information about your care. Using a three-ring binder is most effective, because it allows you to add information. Many of the forms for charting are currently found in various AAKP educational resources, including the book Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function.

The first item of importance in your notebook is the “Important Medical Information” sheet. This sheet lists all of your contacts for easy reference including: all doctors, their addresses and phone and fax numbers; the pharmacy; dietitian; your emergency contact; your insurance plan name, phone number and policy number; and other healthcare professionals you may encounter, such as a diabetes educator and/or social worker.

The next section should be a health journal that lists dates and illnesses, surgeries, appointments, hospitalizations, etc. You should list every event. As your chart grows over the years, you will realize how much important information you know. It is also helpful in this section to include a listing of relatives’ (i.e. siblings and parents) illnesses, as some diseases are hereditary. See Linda’s journal below.

Health Journal

Linda Brown

Date:                        Event:

3/12/03                    Hospitalized four days for birth of son - c-section

10/4/03                    Diagnosed with type 2 diabetes

6/1/04                      Diagnosed with CKD by endocrinologist

6/8/04                      Nephrologist confirms CKD

6/10/04                    Kidney Biopsy

7/12/04                    Cut finger – emergency room visit for four stitches.

One should also keep a “Medications” chart. This chart should list all medicines, their strengths, instructions, start and stop dates and special instructions. You may also wish to add a pocket directly behind this chart to keep the pharmacy instructions that are given to you with medications. These instructions are handy references that tell you how to take the medicine, side effects you may experience, descriptions of drugs, etc.

As a CKD patient, there are several charts to include in your notebook that are helpful in your record keeping. However, it is highly recommended that besides kidney information you keep other important results, such as mammograms, pap tests, colonoscopies, prostate exams and immunization records, such as hepatitis, flu and pneumonia shots.

One of the most important charts for CKD patients is the “Complete Blood Count” chart. This chart contains your blood test results. It lists the test, acceptable levels and allows you to write results for each time you have the test done. See below.

Because high blood pressure can be either a cause or effect of kidney disease, keeping a blood pressure log is very important. This tool helps your doctor monitor your blood pressure out of the doctor’s office. If you have never taken your blood pressure before at home, ask your doctor’s nurse to teach you how.

If you are diabetic, it is a good idea to keep a chart on your medication doses, times and readings. The diabetes educator will teach you how to keep this information. Over time, you may be able to see a pattern and better control your diabetes.

Your notebook is also a good place to keep an ongoing list of questions for your healthcare professional and to record the answers. Many people, when actually in the doctor’s office, forget their questions or even the answers. Some people like to keep this information by specific office visit, such as a page listing of what doctor was seen, for what reason, due to what symptoms, specific questions and answers and the doctor’s course of action.

Do not be afraid to ask your healthcare professional for copies of tests, such as blood work, biopsies, x-rays, ultrasounds, heart tests and others. Unlike in the past, you have every right to request this information. Keep copies in pockets that you added to your notebook. These test results will be helpful for future meetings with new physicians or in an emergency.

Some people also like to keep a journal briefly outlining how they feel on a specific day. This can include both physical and emotional issues. For instance, our friend Linda chronicles when she is tired, does not have an appetite, feels blue, has a headache or does not respond well to her insulin.

In today’s age, when one sees numerous healthcare professionals or has insurance that may or may not authorize certain tests, a patient can no longer rely on one doctor to keep all records of his or her healthcare. The patient, who is the leader of the healthcare team, must take responsibility to keep detailed records. Much like keeping the service records on your car, such a tool can help keep you running smoothly for the long road ahead.

For more information on tools for your own record keeping, call AAKP at (800) 749-2257 or visit our Web site at www.aakp.org.

Kris Robinson is the AAKP Executive Director.

This article originally appeared in the September/October 2004 issue of Kidney Beginnings: The Magazine, Vol. 3, No. 3.

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