By Eli A. Friedman, MD

WHY ME?

Whenever something bad happens to us, we immediately wonder what, if anything, we did to deserve such a fate. Learning that you have diabetes, and that it will not go away, can be stunning, terrible news. Where can you hide? What can you do? Will the disease kill you? When? And then, having finally managed to figure out what a blood sugar is and how to stick your finger to measure it, you must cope with the news that this terrible disease can injure your eyes, nerves, heart and kidneys. Adding to the burden, after years of struggling, you are told that you now have end-stage renal disease (ESRD) and should consider whether you will have dialysis or an operation to place someone else’s kidney inside you. Wow! That is a lot to handle!

JUST WHAT IS DIABETES AND WHERE DID IT COME FROM?

In evolution, changes that came to the human species for a good reason can have an unexpected bad effect. Think about malaria from a mosquito bite, a disease that’s microscopic parasites destroy our red blood cells and may lead to shaking chills, anemia and death. Nature began our protection by having a mutation (change) in the genes controlling our hemoglobin (the red chemical in blood that carries oxygen) from “A” to “sickle.” The sickle red blood cell was resistant to malaria, letting us survive the infection, but after years of “sickle cell anemia,” the heart, spleen, kidneys and brain were injured by this strange change to our blood – a survival gene brought on a disease.

In diabetes, our guess is that about 50,000 years ago, when our ancestors were dragging their knuckles, our tribe would continue for another generation if the hunt was successful or risk death by starvation if it was not. Feast versus famine and death was the rule. Then, a mutation came about due to nature’s gift of the “thrifty gene” and we were able to store fat in our liver and muscles when food was plentiful being able to recall these stores when it was not. For many, many generations, the thrifty gene was our friend, allowing us to live through periods when the hunt failed and many would have died. By the 20th century, in industrialized nations, humans had freedom from starvation and Kentucky Fried Chicken as often as we wished. So it came to pass that, when we had enough food, the thrifty gene kept up storing energy until we became fat, and an increasing number of us had this curse recognized by the Egyptians – now called type 2 diabetes. Type 2 diabetes is gradual in onset and reflects first “insulin resistance” and later inadequate release of insulin and generally afflicts older, overweight adolescents and adults. There are two major diabetes types: the dramatic onset, type 1 – previously called insulin-dependent or juvenile – reflects an immune attack on insulin producing cells in the pancreas and mainly attacks children or young adults who require daily insulin injections to stay alive. Our path to survive the absence of food converted to a road to diabetic hell. This change is what we humans are continuing toward at an ever faster pace that is frighteningly called the “Diabetes Pandemic.”

WHAT CAN I DO NOW?

Your most important goal must be to learn about both diabetes and the kidney, especially what to expect as the years pass and damage from diabetes worsens. On the positive side, we now know enough about what can go wrong to take positive steps to delay, and even prevent, major diabetic destruction of eyesight and kidney function. It is also possible to protect the heart by relatively simple actions. Underlying your plan is the realization that delays in facing your disease, caused by fear or confusion, must be met head on and treatment should be continuous. Educational materials are available free from both AAKP and the American Diabetes Association. Get and read them. Become an “expert” in how to defend your kidneys.

One person should be “Captain of your Medical Ship.” Find your key “representative” and develop a sensible working relationship in which you feel comfortable calling for advice or complaining about whatever may be bothering you. Being able to freely say how you feel is the key to having your doctor know what you want done. If you are in the position where you believe your doctor will not listen, is too busy or does not explain enough, change doctors.

The key components of a good care plan for diabetes are:

1. Reduce “high” blood pressure to less than 135/80 mmHg.
This action is probably the most vital part of your healthcare plan. Wonderful drugs now available, called “renoprotective” actually defend the heart, kidneys and blood vessels from injury. Key drugs must be selected for your specific needs, which means that a close working relationship with your doctor is essential.

2. Reduce high blood lipid (fat, cholesterol) levels to “normal.”
Studies throughout the past three years indicate that getting your lipids under control may be as beneficial as treating hypertension. The Noble Prize was given to researchers who introduced “statins” to lower lipids because they really make a difference. There are other types of effective lipid-reducing drugs and – as for hypertension – you and your medicines have to fit together.

3. Regulate blood glucose (sugar) levels to near normal.
Regulating blood glucose is a difficult demand, because the mixture of drugs and insulin is often confusing and it all hinges on repeated annoying finger-stick glucose testing – this is the part of your plan that makes you think of giving up. Even though you realize that a normal glucose today will delay complications five years from now, it still requires courage and stamina to stay with “the plan.” The evidence is strong that the closer to normal you maintain your blood glucose, the fewer and less severe the complications that will follow.

4. Exercise daily.
Find activities that permit you to maintain your lifestyle and do them. For example, 30 minutes for a daily walk around your neighborhood is not a terrible sentence. Plan this with your doctor and do it!

5. Regulate diet and weight, which usually means weight reduction.
This is perhaps the toughest thing to be asked to do. Isn’t it always the thinnest doctor or nutritionist who tells you to lose weight? And, aren’t you overweight because of the thrifty gene? Yes, to both. There are things you can do immediately that aren’t so hard. Limit fats and try to make them unsaturated – margarine instead of butter and skim milk rather than cream. Replace beef with poultry and fish. Talk with your nutritionist as a friend and not an opponent.

IS IT ALL OVER ONCE MY KIDNEYS fail?

Unfortunately, when the term ESRD was introduced, nephrologists could not have anticipated the extent of the public relations blunder. Who wants to be the “end-stage” of anything? One fact you should know is that diabetes is the number one cause of kidney failure. It accounts for about one-half of all new patients enrolled in Medicare-supported ESRD programs. AAKP members have shown that it is never too late to become a “smart patient” and defend your body and future. An informed patient is more likely to handle the stress and need for self-care that is part of ESRD therapy. Indeed, if done correctly, you are the most important member of your healthcare team. Whether it is choosing between peritoneal dialysis or hemodialysis, or deciding to accept a kidney transplant from a family member, you need to know “who, when, why and how” of every step in your care. AAKP urges you to consider the benefit of becoming a truly informed patient by devoting careful and continuing attention to the following:

HAVE YOUR VITAL INFORMATION AT HAND

Starting today, in an obvious place in your home – such as the refrigerator door –andin your purse or wallet always , collect and post the following in a type size that is easily readable:

Vital information:

1. Your key doctor’s name and phone number.
2. Other doctors’ names and phone numbers.
3. The number to call after hours or in a medical emergency (clinic or office).
4. Your Medical Record Numbers (hospital, Medicare and insurance).
5. A list of all medications and doses.
6. Pharmacy number.
7. Transportation number (ambulet or taxi).
8. Whom to contact in an emergency (becoming unconsciousness).

WHEN TRAVELING OR SEEING A NEW DOCTOR, PREPARE IMPORTANT PERSONAL DIABETES INFORMATION

Know the facts about you needed by the doctors, and everyone else responsible for maintaining your health. Try to collect and write down the following answers:

Facts about you

1. Does your family have diabetes? Who and at what age?
2. Do you know what type (1 or 2) your diabetes is?
3. When (at what age or what year) was your diabetes diagnosed?
4. Have you ever been in coma from diabetes (high blood sugar or ketones)?
5. Have you been in coma from low blood sugar (hypoglycemia, too much insulin or diabetes pills)?
6. Do you test your blood sugar (glucose)? How often? Do you write the number down?
7. What is the range of your blood glucose (sugar) tests?
8. Have you had glycohemoglobin (A1C) tests? Do you know this number? Do you know what the test means and what your number should be?
9. Are you anemic (low blood count)? Do you know this number and what it should be?
10. Have you had a urine albumin test? Do you know what the value is?
11. Have you had a blood creatinine test? Do you know the value and why this “kidney function” test was performed?
12. If your kidney function loss is severe, have treatment chioces been discussed with you (kidney transplant, hemodialysis, peritoneal dialysis, no treatment)?
13. If it seems like ESRD is about to happen, have you discussed a family transplant and home hemodialysis?

AFTER THE ONSET OF ESRD YOU SHOULD KNOW

1.The name and telephone number of your  dialysis transplant facility.
2. A key person to contact.
3. Your treatment plan, including all medications (drug, dose and frequency). Are you on the transplant list?
4.Your most recent key numbers, especially blood pressure, hematocrit, serum albumin, serum creatinine (transplant recipients) and hemoglobin A1c (an indication of the quality of blood glucose control – best is less than 7 percent and is acceptable up to 8 percent.

All of these suggestions impose a burden on your life – telling you what to do and how to do it. Isn’t America supposed to be the land of the free? Of course, but the reality facing you, your family and your healthcare team is that in order to keep you with us, in your struggle with diabetes, we have to use primitive measures until something better comes along. On the bright side is the rapidly approaching “something better.” Before this decade ends, it is likely that diabetic complications will be preventable by restoring the body’s ability to regulate blood sugar by either injecting new kinds of cells or transforming cells you now have into insulin producers. If you were a mouse, rat or small dog with diabetes, we could totally block all of its complications by experimental drugs that are not yet ready for prime time. AAKP wants you to be around to see your grandchildren. So think seriously about accepting the challenge and doing all that is necessary to ensure your future.

Dr. Friedman is Chief of the Division of Renal Disease for State University of New York, Downstate Medical Center and serves as Chairperson of the AAKP Medical Advisory Board.

This article originally appeared in the November 2004 issue of aakpRENALIFE, Vol. 20, No. 3.

Back