By Eli A. Friedman, MD

Dr. Friedman provides practical suggestions and tips for patients with kidney disease as a result of diabetes.

Knowing what is happening to you and why, should improve the overwhelming experience of having kidney disease as a complication of diabetes. There is no doubt that in diabetes, effective management will slow the loss of kidney function that leads to kidney failure or end-stage renal disease (ESRD). Without doubt, it is never too late to become a “smart patient” to defend your kidneys and your future.

AAKP believes that an informed patient is more likely to handle the stress and need for self-care that is part of kidney disease. Also, the often “too busy” doctors and nurses who deliver your treatment are less likely to make mistakes or “forget” to tell you important things when they know you are an always “switched on” member of your own healthcare team. It has been surprising to realize that many kidney patients are actually “detached” from their medical care givers, meaning that even the most vital details of what are happening are unknown. You will feel better about how your life is going when you are fully informed about your medical treatment. AAKP urges you to consider the benefit of becoming a truly informed patient by devoting careful and ongoing attention to the following details of your care.

Key Contact Numbers

Somewhere, obvious in your home (refrigerator door?), and in your purse or wallet, the following should be in a type size that is read easily:

• Your key doctor’s name and phone number

• Other doctors’ names and phone numbers (all of them)

• The number to call after hours or in a medical emergency (clinic, office)

• Your medical record numbers (hospital, Medicare, insurance)

• A list of all medications and doses

• Pharmacy number

• Transportation number (ambulance or taxi)

• Whom to contact in an emergency (becoming unconsciousness)

Essential Diabetes Personal Information

Your continuing management of diabetes requires that you know the facts about yourself that doctors and everyone else that becomes responsible (with you) will need for maintaining your health. Each of the items listed are things you should know and may wish to write down:

• Does your family have diabetes: who and what age were they diagnosed with diabetes?

• Do you know what type (1 or 2) your diabetes is?

• When (at what age, or which year) was your diabetes diagnosed?

• Have you ever been in a coma from diabetes (high blood sugar, ketones)?

• Have you been in a coma from low blood sugar (hypoglycemia, too much insulin or diabetes pills)?

• Do you test your blood sugar (glucose)? How often? Do you write the number down?

• What is the range of your blood glucose (sugar) tests (from what to what)?

• Have you had glycohemoglobin (A1C) tests? Do you know this number? Do you know what the test means and what your number should be?

• Are you anemic (low blood count)? Do you  know this number and what it should be?

• Have you had a urine albumin test? Do you know what the value is?

• Have you had a blood creatinine test? Do you know the value and why this “kidney function” test was performed?

• If your kidney function loss is severe, have the choices in ultimate treatment been discussed with you: kidney transplant, hemodialysis, peritoneal dialysis or no treatment?

Defending Your Body

Protecting your body against the complications of diabetes is a job both your doctors and you have to accept. Of course, having diabetes does not change the usual risks of living (being hit by a drunk driver or getting food poisoning on a vacation). There are, however, special risks that the diabetic patient must face, for example, vision problems. 

Diabetes is the biggest cause of blindness in adults [bad news]. However, blindness can usually be prevented [good news]. Do you understand the difference between an optometrist (fits glasses) and an ophthalmologist (medical doctor concerned with eyes)? You should see an ophthalmologist at least once a year. Do you do this?

Hypertension (high blood pressure) is a cause of death in people with diabetes, but it can be controlled. Do you know what your blood pressure is? If you have hypertension, and the majority of those with diabetes do, has your doctor explained a plan for its treatment? OK, so the different drugs are confusing (to doctors also), but can you say which drugs you are taking and whether they are working to give you a normal blood pressure? If not, why?

Heart attacks and heart failure are risks for the diabetic person. Not smoking, getting your weight toward normal, and especially, control of high blood pressure can greatly reduce this risk. Have you had a heart evaluation by a cardiologist (heart specialist)?  When are you to have the next visit?

Diabetic people may not be able to see their feet clearly because of their eye complications. Yet, many try to cut their own toenails! You need someone else to care for your feet, such as a podiatrist but a family member can substitute. Does someone look at your feet every day?

Is the every day control of your blood sugar unsatisfactory? Despite pills, insulin, diet and exercise, are you still out of control (sugars too high, too low or both)? If yes, ask your primary doctor whether consultation with an endocrinologist (specialist for glands and hormones) is the next step.

Are your teeth and gums in good shape? When did you last see a dentist? Does your diet advice make sense to you?  If not, ask your doctor to arrange a visit to a nutritionist (diet helper).

As a chronic kidney disease patient, you are probably the care of a nephrologist (kidney doctor). Newer studies show that this really makes a difference. Regulating your diabetes, controlling your blood pressure and arranging for needed ESRD therapy, are all duties of your nephrologist that cannot be done without your active input. Is this job being done to your satisfaction?

Unfortunately, there are many other specialists and team members that diabetic patients may need. Most of all, it is best for you to have one person who is “Captain of the Ship.” Is there a medical person who acts as your representative in dealing with the medical world? If not, you should find that “representative” now. Almost any physician who feels comfortable with the job can as your representative. Get one!

Eli A. Friedman, MD, is a distinguished teaching professor of medicine, Chief of the Renal Disease Division at the Downstate Medical Center in Brooklyn, New York. Dr. Friedman is also Chairperson of AAKP’s Medical Advisory Board.

This article originally appeared in the March/April 2004 issue of Kidney Beginnings: The Magazine, Vol. 3, No. 1.

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