By Eli A. Friedman, MD & Amy L. Friedman, MD

Getting The Alarming News That You Have Kidney Failure

Whether you were or were not prepared to hear the bad news, learning your kidneys will no longer support your life comes as a shock. Most of us are about as aware of our kidneys as we are of our spleen – its there, inside, doing something important, but otherwise why care about it? But, when our kidneys, two Idaho potato-sized organs on either side of our back, stop working, we appreciate all that they have silently been doing to keep us well.

Kidneys, of course, make urine, which contains the water, salt and nitrogen-containing wastes produced from the proteins we eat and the always switched-on, key body chemical reactions that keep us alive. As kidneys fail, these “usual” chemicals such as urea, creatinine and phosphate, reach higher and higher blood levels causing us to be sick with uremia – a Greek word for “urine in the blood.”

For most kidney patients, the kidneys do not usually fail all at once. With the exception of sudden and irreversible kidney poisoning by loss of blood supply or toxic drugs, such as cocaine, kidney disease usually slowly progresses over many months to as long as more than ten years. When kidney doctors learned there may be time to slow the course of kidney disease, a strategy of what is called “renoprotection” was developed to slow its progress, keeping you in good shape for as long as possible. Renoprotection attempts to stop you from doing things that are “bad” for your “condition,” such as overeating and smoking, while treating you to get your blood pressure and blood fat concentrations, which tend to be high in kidney disease, back to normal. What the National Kidney Foundation calls “chronic kidney disease (CKD)” is divided into Stages 1 to 5, with Stage 1 (silently present in more than 20 million Americans), while Stage 5 (about 300,000 Americans) being the end of the line, meaning you better get treated or you will die. Your interest in reading this piece probably came from being upset by finding out that you are in Stage 4 or 5.

Uremia, as it gets worse, was given the terrible name of “end-stage renal disease (ESRD)” when death is near without treatment. The label is dreadful because no one wants to be an “end stage” of anything, especially a disease that we can now treat successfully for 40 or more years. Once we developed methods to remove the water and toxins that build up in kidney failure, another wonderful function of the normal kidney was made clear by its absence. Healthy kidneys not only get rid of wastes in urine, they are wonderful factories that make hormones (chemicals made in one part of the body that do things throughout the body), which are vital to everyday life. For example, our bone marrow is the place where red blood cells are manufactured under the “instruction” of erythropoietin (EPO), a hormone produced by the kidney. Our kidneys are also sources of active Vitamin D, the hormone that helps keep our bones healthy. Other key hormones, such as active Vitamin D, that are released by healthy kidneys when absent due to ESRD, add to the burden of sickness in uremia. That is why ESRD treatment is called “renal replacement therapy,” as we try not only to remove wastes that shouldn’t be there but also give back missing hormones and other chemicals.

Which Kidney Therapy Is Best For Me?

Put yourself in the position of a newly diagnosed Stage 5 ESRD patient receiving advice as to which course to follow is best. Throughout the parts of the world where people have reasonable health care, there are three main treatment options: peritoneal dialysis, hemodialysis and kidney transplantation. A major influence on which treatment you actually begin is how these therapies are described as you are stressed and overwhelmed by having to make a life-changing decision, though you find it hard to understand the choices open to you. What often happens is that your so-called “informed free choice” turns out to be an embarrassed response to growing panic.

In Toronto, Canada, for instance, where an excellent and world-famous peritoneal dialysis program is a major undertaking, as many as 40 percent of newly treated ESRD patients “select” this option, which is applied to fewer than 10 percent nationally. Similarly, in Seattle, where home hemodialysis is championed by the University Medical Center where Drs. Scribner and Blagg started maintenance hemodialysis and documented that it could be done safely with superb survival at home. Up to one-third of new ESRD patients “choose” this therapy, though the national average may be less than 5 percent. (See the tables below for positive and negative aspects of dialysis therapy.)

Dialysis For ESRD

Positive Aspects

• Easily started even in locations without big University centers.

• Long experience with large numbers of patients means universal availability of skilled caretakers.

• With added erythropoietin (EPO) & Vitamin D, long-term health for ten or more years is reasonable.

• Can be performed at home.

• Travel dialysis has been developed at many locations, including aboard cruise ships.

• Many patients are able to return to work, school or home responsibilities.

• Survival approximately equivalent on hemodialysis and peritoneal dialysis.

Negative Aspects

• Vascular and peritoneal access termed “Achilles heal” because of frequent infection and hospitalizations.

• Excessive time required to complete treatments sometimes preventing full return to life activities.

• Rehabilitation is only partial as uremia persists even with high quality dialysis.

• Mortality worse than with a kidney transplant.

• Depression common in both forms of dialysis.

• Patient noncompliance because of fatigue a major concern.

• Much inferior survival for diabetic people compared with a kidney transplant.

And what about kidney transplantation? In some hospitals, no ESRD patients are ever referred for a kidney transplant unless they specifically request such referral. So serious has the “retention” of patients on dialysis become, meaning they are not offered the opportunity for a transplant, that state and federal agencies insist on presentation of the choice for a kidney transplant as a condition of dialysis facility approval. AAKP sponsors articles like this to get the message across that there are choices and you are free to do what you believe is best for you. You cannot make the “best” choice for yourself until you actually understand what is “out there” on the treatment menu.

Unfortunately, there is no book or Web site that will give the “absolute truth” as to what might be best for you. In fact, there has never been a prospective, alternate choice comparison between the various forms of dialysis and a kidney transplant. In a free society, how would it be possible to do such a study? We could not call Mr. Jones in and say he is to have a kidney transplant tomorrow while we advise Ms. Smith that she has been assigned to peritoneal dialysis. Think about it. What would you do if your doctor told you that it was decided that you would either have a transplant or start a specific form of dialysis because of how your “number came up?” You would correctly be outraged and may start to change doctors and centers.

Using this kind of thinking, is it fair to say whether you should have a kidney transplant or start (stay on) dialysis in November 2005? (See the tables below for a list of major positive and negative aspects of kidney transplantation.)

Kidney Transplantation

Positive Aspects

• Best rehabilitation of all ESRD treatments.

• Best correction of uremia, including anemia and need for Vitamin D.

• High probability of successful pregnancy so long as kidney function remains good.

• Track record of more than a quarter-century of regained normal life in many recipients.

• Can be performed without any need for dialysis in some patients.

• Hospital expense covered by Medicare in most situations.

• Unlimited travel and return to work are reasonable hopes.

• Newer drugs less toxic to patients.

• Many transplant centers now discontinue “steroids,” a major cause of past problems.

• Should a transplant fail, a second or third transplant is possible.

Negative Aspects

• Severe organ shortage creates long waits for transplant unless a living donor is available.

• Surgery and anesthesia can be life threatening, though the risk of death is low for most patients.

• Immunosuppressive drugs to prevent kidney graft rejection are complicated to use, can have serious side effects, and must be taken indefinitely.

• Prednisone (cortisone steroid) has multiple bad reactions including bone disease, high blood pressure & stomach ulcers.

• Post-transplant diabetes afflicts as many as 20 to 30 percent of recipients depending on drugs chosen to prevent rejection and the patient’s weight.

• Constant worry over rejection of the kidney often causes anxiety that has been termed “creatinine terror.”

• Children have not experienced normal growth & development.

• Shortage of deceased donor organs means long waits of up to ten years in major cities.

• The patient’s portion of expensive drug payments can be a family financial burden, especially after three years when Medicare support ends.

• Underground market for kidneys may exploit poor donors to serve rich recipients for up to one-quarter of all kidney transplants performed world wide.

• Poor nations cannot afford cost of surgery or drugs.

Must All Kidney Failure Patients Be Treated: Can’t I Just Be Left Alone?

One other issue disturbs some patients, just by being mentioned. That is, without question, your first and most serious decision once you face the reality that you have ESRD – do you want to be treated or have you had “enough?” When loss of renal function takes place over months to years, there is lots of time to think about what in other areas has been called “advanced directives.” For example, many healthy people have signed documents stating that should they be made dependent on breathing and blood pressure machine support, they would rather say no and die. Our society now has ethics committees and social workers to assist you and your doctor, should you consider having a kidney transplant or not starting dialysis. Throughout the United States, a network of hospices has been established as places to go for death with dignity – meaning while you will be comforted in a cheerful and clean place, your care plan will consist of nothing beyond nutrition, pain relief, and respectful care as death approaches in weeks to months.

Consider a progressively uremic, 85-year-old blind, double-leg-amputated, nursing home, diabetic resident who cannot control bowel or urine functions, who has a paralyzing stroke preventing any motion on the right side of the body. Providing that a psychiatric consultant confirms that the patient is oriented and able to make independent decisions, refusal of uremia therapy is understandable and ought not to be an issue over which patient or family guilt is provoked by the medical care team. Put yourself in the position of a newly diagnosed ESRD patient receiving advice as to which course to follow is best. Now, we must list four, not three, major and distinct roads that might be followed, starting with deciding not to have any ESRD treatment at all, meaning opting to die.

Options in Uremia Therapy

• No Active Renal Intervention: Supportive care including referral to a hospice.

• Peritoneal Dialysis: Day or night, passive flow or machine regulated.

• Hemodialysis: Three times weekly or daily, night or day, home or facility.

• Kidney Transplantation: Deceased donor, living related donor, living unrelated donor, marginal deceased donor.

The reasons to consider the “No Treatment” option were behind Pulitzer Prize winning author (Tales of the South Pacific) James Michener’s choice in Austin, Texas, to discontinue dialysis after two years. Michener withdrew at the age of 90 after additional medical problems jeopardized the quality of his incredible life, and died Oct. 16, 1997, ten days later.

Moving from what appears a rational decision by a sad and hopeless Michener to relatively healthier people like you, the decision to refuse your doctor’s proposed kidney treatment creates ethical and legal issues that may try your soul. Every patient has the right to say no, and that decision must be respected so long as the patient is not demented or so intoxicated by kidney failure that clear thinking is not possible. Do you want to say no to all treatment or continue to think about what could be done?

Yes, I Want To Be Treated, What Should I Do?

Now that you have gotten over being insulted by being asked whether you want what your ESRD medical team is ready to provide, you have a lot to do, soon. First of all, whether by your doctor, nurse educator or social worker, you have to get the facts about what is wrong with you. Perhaps the most important information you can provide to medical professionals is Contact Information, meaning who you should call when you have a medical need. (To obtain a personal Patient Information Sheet to track such information, see the September issue of aakpRENALIFE on AAKP’s Web site at www.aakp.org.). Imagine it is Christmas Eve and you develop a temperature of 104 degrees along with shaking chills. Do you know which doctor to call? And, if that doctor is unavailable, is there a “next person” on your list? If you have decided to begin hemodialysis, have you seen a transplant recipient and talked with the transplant team first? Can you name the medicines you are taking and why each one was prescribed?

Life after onset of ESRD can be meaningful and fulfilling. Whether working as a store clerk, medical doctor directing a dialysis program, farmer, national basketball star, or prize-winning Hollywood actor, kidney failure patients under treatment hold on to purpose, gain joy and remain important to family and loved ones. Along the way, AAKP will be cheering with you! There is probably no better way to keep your spirits up than to bond with other AAKP members in the same situation, sharing your emotions, and giving and getting the kind of support that can come from no other source.

Eli A. Friedman, MD, 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.

Amy L. Friedman, MD, is an associate professor at Yale University School of Medicine, Department of Surgery in New Haven, Conn., and serves on the AAKP National Board of Directors and AAKP Medical Advisory Board.

This article originally appeared in the November 2005 issue of aakpRENALIFE, Vol. 21, No. 3.

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