Letter to My Dialysis Patient

Dear Patient:
Welcome to Athens Kidney Center. At this time, you have reached what we refer to as End-Stage Kidney Failure, meaning that both your kidneys are so damaged that they can no longer support normal life. This happens when the capacity of both kidneys are at about 10 percent of normal; that is, ten men doing the job of one hundred. As you can imagine, they cannot complete the job satisfactorily, they will tire more easily, they cannot do it all, and before long, there will be only five men left. That, sadly, is the case with what is left of your kidneys.

At this point, you may also experience rather vague symptoms, such as morning nausea, generalized fatigue, muscle cramps, shakiness, easy skin bruising, bleeding gums, a metallic taste in the mouth, increased forgetfulness, swelling of the ankles or feet, "bloodshot" red eyes, dry itchy skin, frothy or blood-tinged urine, as well as persistent constipation. Oddly enough, some diabetics notice a sudden "improvement" in blood sugar control, often with more frequent hypoglycemic episodes (low blood sugar). Others may have more difficulty controlling their blood pressure levels.

The most common reasons for kidney failure are uncontrolled high blood pressure and chronic diabetes mellitus.

My job is to artificially replace the function of both your kidneys: to hire a few good ol' boys to do the work of a hundred men. We do this all the time, and we do it very well. All alone, I can easily hire five boys- no sweat. With the help of the excellent nursing staff at Athens Kidney Center, we can hire another five boys. But that only makes ten boys (and not even grown men!). If you help me, we bring in thirty more boys. Indeed, all we do is only a third of what you alone can bring to the table. We really need you to help us to best serve you. That way, we will always win this battle for you.

As for me, I will firmly stand by you, hold your hands, walk with you; I will be your help, I will be your guide and your doctor. My responsibility is to stay at the top of my chosen field, keep abreast of new advances that may help you, and find new ways to support you. But I will need your help for this. Talk to me about the way you feel, tell me your story, allow me to walk with you on this singular journey. If you cannot talk feely with your doctor, something is wrong. We should certainly say our prayers, but should also take our prescribed medicines.

Patients often wonder why they still make "urine" if their kidneys are "completely gone". Actually, even though patients with kidney failure might make "water", that is not, strictly speaking, really urine. Urine, which is a combination of water and waste material, is the vehicle for excreting poisonous waste material from the blood. These poisonous wastes are generated from the wear and tear of the body's machinery. Urine, therefore, is not just "water": it has a dark yellow or amber color, an often "pungent" smell (especially if allowed to stand for a while), and is salty to taste. On the other hand, water is just that: water. Maybe, what you might call "urine" is actually water, without the waste material.

The kidneys "wash" our blood, ridding it of poisonous waste and excess salts. The miracle of the kidneys is that of turning blood into urine. We measure the ability of our kidney machines in replacing this specific cleansing function by monitoring your serum level of creatinine, blood urea (BUN), and some crazy calculus called Kt/V above 1.2 each month. Sometimes, those targets may not be reached for certain specific reasons: you may have a lot of muscle (which makes your creatinine too high), have eaten a lot of meat (which makes your BUN high), or simply not dialyzing enough, which will make your Kt/V too low. We now have enough data to show that the higher your Kt/V, the better you will feel, and the longer you should live. To keep the Kt/V high enough, you may have to increase your time on the machine.

The kidneys do more than simply "wash" the blood. They also stimulate the bone marrow to make red blood cells, which is why we may regularly inject you with an artificial bone marrow "stimulant" called Erythropoietin. We also need to keep your bones strong and your blood vessels unclogged, which is why we ask you to take PhosLo or Renagel with meals. They both do the same thing, keep your serum phosphate low, and help to keep the blood calcium at normal range. If your serum phosphate level gets too high, your body may slowly begin to lay down calcium salts, an amalgam of calcium and phosphate ions. That is why we encourage you to take your phosphate binders (such as Renagel or PhosLo) with each meal.

The food you eat is equally important. We have a handy guide to assist you, as you will find in the folder we will give you at your first office visit. The rules are quite simple: no fried stuff, increase your fiber content, cut out excess salt, do not drink more than seven cups of water each day, and stop smoking.

Do remember that the most common reasons for dying with kidney failure are heart disease and infections. Heart disease usually tracks high blood pressure like a shadow. Therefore, you must continue to monitor your blood pressures closely. It should not be allowed to run above 150/90 at home. If your blood pressure falls during dialysis treatment, we will fix that; just let your nurse know if you feel "washed out" or suddenly faint. Most of the excess blood pressure is really extra water in the body. Remember that you should not gain more than three percent of your body weight between kidney treatments. For most people that is 2 to 3 kilograms of weight. Watch what you eat and drink. And don't smoke anything.

The goal of all this is to help you live longer, healthier and better. If I did absolutely nothing at all, you will probably still do well for a while, but you won't be singing any praises in, say, ten years from now. So, look at all these restrictions as your down-payment for tomorrow's better life. This is your "insurance premium". You are not supposed to live for your dialysis treatments. Your dialysis treatment is there to help you live. Never forget that it is only your kidneys that have failed: a pair of organs roughly the same size as your fists; surely, it is not the same as losing your heart, your mind, your brain, or even your liver. It has not changed who you are. We will surely replace most of its functions, but the rest would be up to you. So, go out there. Sing a song. Join a church. See more sunshine. Wave to a stranger. Pick up a new hobby. Read a book. Plant a tree. And let's talk some more about placing you on the transplant list soon.

With best wishes from your doctor,

Beze A. Adogu, MD, PhD

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  • Author:
    Beze A. Adogu, MD, PhD

  • Date Posted:
    Wednesday, January 28