KIDNEY FAILURE: PREVENTION, DIALYSIS, OR TRANSPLANTATION

by Ed Bryant

Photo: portrait. Caption: Ed Bryant

I have a special interest in renal failure, as I have had a kidney transplant for over 16 years, and I feel great. I know folks who've had transplants far longer than I have, and they're doing fine, too. I hope the following answers some questions.

Prevention Comes First

"I'm sorry, but your kidneys are beginning to fail..." If you hear those words, what do you do next? Knowing that nephropathy, kidney failure, is a frequent complication of diabetes, do you sit and wait to get worse, or do you act? What can YOU do to prevent, minimize, or slow kidney failure?

The Diabetes Control and Complications Trial (DCCT), a large, long–term, federally–funded study of the relationship between diabetes control and the onset of complications, in type 1 diabetics, found that there was a tight statistical link between quality of diabetes control and ramifications such as heart and blood vessel disease, diabetic eye disease, and diabetogenic kidney failure. The British UKPDS (United Kingdom Prospective Diabetes Study), a similar long-term look at type 2 diabetes, found the same pattern of results. We now know the tighter your control, the less chance you will experience complications. (Note the linkage is not absolute; you can do your best and still face these ramifications, though the statistical risk-reduction is clear.)

The DCCT's findings are not mysterious. High blood sugar causes diabetes complications; and the better job you do of keeping your blood glucose numbers down where they should be, the less your chance of developing conditions such as nephropathy. The importance of this cannot be overstated: Good self–management is the BEST way to cut the risk of experiencing diabetes complications.

There are other things you can do to cut the risk. Some of them come under the heading of "healthy lifestyle." First, don't smoke. Nicotine, the narcotic active ingredient in tobacco, is a vasoconstrictor, raising blood pressure, stiffening capillaries, and making it harder for the kidneys to filter wastes.

Urinary tract infections need prompt treatment, to limit the damage they can do to already strained kidneys. Tell your doctor promptly, if you think you have such an infection.

Excessive obesity both raises blood pressure and increases insulin resistance. Keeping your weight at or below your recommended level helps in general, and the resultant blood pressure drop is good for your kidneys.

You need to control your cholesterol, as too much of this fatty substance in your blood overworks (and can even clog up) your kidneys. Diet, exercise, and appropriate medications can lower your cholesterol levels.

Heart specialists have known for years that high levels of stress can be damaging. Excessive stress, driving up blood pressure, can harm the kidneys by raising fluid pressure, further straining already weakened filter networks. Stress reduction is part of a healthy lifestyle.

There is a lot of disagreement among doctors over the specifics of what will prevent kidney failure. So much is genetics; more may be environment, or other factors we are not yet aware of. Other than "keep your diabetes under the best possible control, and live a healthy lifestyle," we can offer little advice about prevention. The manual, "The Prevention and Treatment of Complications of Diabetes Mellitus," published 1991 by the Centers for Disease Control (and now available on the World Wide Web, at: http://www.cdc.gov/diabetes/pubs/pubs.htm), states: "At present, strategies for preventing diabetic nephropathy must be viewed as limited in their effectiveness, since the exact pathogenic factors responsible for this condition are unknown."

Once kidney disease is diagnosed, however, a great deal can be done to retard its progression, and sometimes interventions such as described above are sufficient to keep the need for dialysis or transplantation well at bay. Current statistics suggest up to four out of every ten diabetics may experience measurable kidney disease, though with considerations such as described in this article, many of these individuals should be able to avoid outright kidney failure, End Stage Renal Disease (ESRD).

If you do your best and still experience kidney failure, it is not time to despair. Whether you choose transplantation, or one of the forms of dialysis, the outlook is good and getting better all the time.

Testing Your Kidney

How is the severity of kidney disease measured? Several tests measure creatinine, a waste product from muscle mass. Although everyone produces creatinine, people whose kidneys are failing cannot properly excrete it. One test measures the amount of creatinine in the blood, and the other is "creatinine clearance," a 24–hour urine test. Normal "blood creatinine," for someone with healthy kidneys, is about 0.7 to 1.3. Government guidelines (April 1995) recommend dialysis when the blood creatinine rises to 6 or above (the number rises as you get worse). However, some diabetics will experience kidney failure before that point. There is much variation between individuals who have ESRD, and the actual range for "kidney failure" runs from 3 through 8--but at or above 6, Medicare will pay for dialysis.

"Creatinine clearance" is considered a more reliable test. In this 24-hour urine test, the numbers produced approximately indicate the percent of normal kidney function remaining to the individual (the number goes down as you get worse). The 1995 government guidelines (which relate to Medicare part B eligibility) state they will fund dialysis when the test produces a reading of 15 or less.

Two other tests measure protein spillage into the urine. These are the microalbumin test and the test for proteinurea. The protein albumin is not normally excreted into the urine, and its presence in the urine, in small amounts (microalbuminuria) or larger concentrations (proteinurea) can indicate kidney disease. While not considered absolute diagnostic evidence, a positive finding in either should be immediately followed by further testing, as these tests are very sensitive, and the microalbumin test can detect kidney disease long before the other tests–-allowing earlier medical intervention.

Options

Individuals experiencing impaired kidney function, but whose test results indicate that they do not yet need dialysis or transplantation, might benefit from two new therapies. The first is regular use of ACE (Angiotensin-Converting-Enzyme) Inhibitors, commonly used to control hypertension, high blood pressure. Now widely accepted, these ACE Inhibitors have been shown to significantly reduce further kidney degeneration. In FDA Clinicals, the ACE Inhibitor Captopril (trade name Capoten) was given to patients showing early signs of kidney damage. It reduced fluid pressure in the kidneys, and cut in half the rate of kidney failure in its test population. Doctors have since prescribed other ACE Inhibitors, with similar results. Note: A diabetic experiencing kidney failure, but whose blood pressure is not elevated, can still use ACE Inhibitors for keeping fluid pressure down in the kidneys. This therapy has been shown to significantly reduce strain on eyes and cardiovascular system as well. Talk to your nephrologist about the ACE Inhibitors.

A new class of similar drugs is the Angiotensin II Receptor Antagonists (or ARBs). Teveten, the first member of this class to gain FDA approval, "may be of benefit in preserving renal function in patients with progressive renal disease," researchers state.

Aminoguanidine (Pimagedine) is another possibility. Tests are still underway, but this drug appears to reduce the damage done to the kidneys by excess glucose in the blood (and may reduce retinopathy as well). Other options are certain to materialize, both for those with impaired kidney function and for those whose kidneys have failed.

End Stage Renal Disease

The damaged kidney may worsen to the point (as described in "Testing Your Kidney," above) where it can no longer carry out its blood-purifying function. Now dialysis or transplantation are necessary in order to preserve life. This is ESRD, end stage renal disease. What are your options then?

There are three. In hemodialysis, the patient's circulatory system is temporarily linked with a machine that performs the blood–cleansing functions of the human kidney. In peritoneal dialysis (CAPD or CCPD) a tube is inserted into the patient's peritoneal cavity, allowing urine and unneeded fluids to periodically drain from the body. The third option is kidney transplantation, in which a donated kidney is surgically implanted into the patient's body.

According to U.S. Renal Data System (USRDS) figures, more than 304,083 Americans have ESRD, and 221,596 of these kidney patients are undergoing dialysis at this time. In 1995, the last year for which Centers for Disease Control (CDC) figures are available, there were 27,851 new cases of ESRD among persons with diabetes, and 98,872 diabetics were undergoing dialysis or transplantation treatment that year. National Institutes of Health statistics show that 35.9% of all individuals facing dialysis are there because of diabetes, and about 40% of those commencing dialysis or seeking a transplant at this time are diabetic. Some remain on dialysis long–term; others make use of the process while awaiting a kidney transplant. As an aside, before 1970, few diabetic ESRD patients were dialyzed; they simply sickened and died. Those who did dialyze faced a high mortality rate. Medicine has come a long way since then, and the odds have improved with the options. Dialysis techniques have improved substantially since my personal experience with them.

Dialysis

Dialysis is not an "artificial kidney." A person undergoing hemodialysis must be hooked up to a machine three times a week, three to four hours per session. A normal vein cannot tolerate the 16–gauge needles that must be inserted into the arm during hemodialysis, so the doctor must surgically connect a vein in the wrist with an artery, forming a bulging fistula that will better accommodate the large needles needed for treatment.

Like the kidney, a hemodialysis machine is a filter. Where it uses tubes and chemicals, the kidney uses millions of microscopic blood vessels, fine enough to pass urine while retaining suspended proteins. Long–term high blood glucose can significantly damage the kidney's filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease. Long–term diabetics often have cardiovascular and blood pressure problems, and the added strain of hemodialysis, with its rise in blood pressure straining eyes and heart function, can be too much for some. The diabetic dialysis patient spends, on the average, 33% more time in the hospital than does the non–diabetic dialysis patient, according to 1999 USRDS figures.

Some patients choose CAPD (continuous ambulatory peritoneal dialysis) or its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. Unlike hemodialysis, which uses a big machine to remove toxic impurities from the blood, peritoneal dialysis works inside the body, making use of the peritoneal membrane to retain a reservoir of dialysis solution, which is exchanged for fresh solution, via catheter, every four to eight hours. CAPD is carried out by the patient, who simply exchanges spent for fresh solution, every four to eight hours, at home, at work, or while travelling. CCPD, its variant, makes use of an automated cycler, which performs the exchanges while the patient is asleep. Although more complicated and machine–dependent, it does allow daytime freedom from exchanges, and may be the appropriate choice for some. Though the risk of infections is heightened (as it is with any permanent catheterization), these two processes have advantages, one being that insulin can be added to the dialysis solution, freeing the patient from the need to inject, and giving good blood sugar control.

Transplantation

Kidney transplantation is a logical alternative for many. It substantially improves a patient's quality of life. Although the transplant recipient must be on anti–rejection/ immunosuppressive therapy for life, with the inherent risk from otherwise nuisance infections, a transplant frees the patient from the many hours spent on hemodialysis procedures each week, or from the periodic "exchanges" and open catheter of CAPD, allowing a nearly normal lifestyle. For those ESRD patients who can handle the stresses of transplant surgery, the resulting gains in physical well–being add up to real improvement in quality of life and overall longevity.

"Fifty percent of all kidney transplantations taking place today are into diabetics," states Giacomo Basadonna, MD, PhD, a transplant surgeon at Yale University School of Medicine, in New Haven, Connecticut. He reports that success rates are identical with kidney transplants performed on non–diabetic ESRD patients. "Today," he advises, "average kidney survival, from a living donor, is greater than 15 years."

One of the areas where we are seeing rapid improvement is immunosuppressive medication. The traditional mix of immunosuppressants: cyclosporine, prednisone, imuran, is giving way to more targeted medications that may have fewer side effects. Cellcept, by Roche/Syntex, and Rapamycin (Rapamune), by Wyeth/Ayerst, have been approved by the FDA, and others are being tested. The risk of organ rejection is always present, but each new development increases the chances of success.

I and others knowledgeable in kidney transplantation advise you to pick the best transplant center possible. Once you have read their statistics, ask your prospective center the following questions. If they don't answer to your satisfaction, you should consider going to another center.

1. Do you have an information packet for prospective donors and recipients?

2. Can you put me in touch with someone who has had a transplant at your center?

3. What is your "graft survival" (success) rate?

4. Who will my transplant surgeon be? If a fellow or resident, will he/she be supervised by a practicing transplant surgeon?

5. How long have your current surgeons been doing kidney transplants? How many have they done? That your center has 35 years experience with kidney transplants is of little consequence if my surgeon has only done ten in his or her career.

6. What is the average post–operative stay in your hospital?

7. When I come for my transplant, or come back for follow–ups, will there be any affordable housing for me and/or my family? (Ronald McDonald House, or other lodging with discount rates...) or will I get stuck in a luxury hotel for $125 a night?

8. How often will I need to come back to the center for follow–ups? Can my nephrologist do the blood tests and send you the results?

9. Can you recommend a nephrologist in my area?

10. Do you have a toll–free number to call for after–transplant information?

11. What is your policy on people with insufficient health insurance? Will you work with an uninsured patient? What will it cost?

12. Are you prepared to satisfy my doubts? Will you show me the documents that answer my questions? Will you guarantee the price quoted?

 

Transplant Patients Speak:

The following individuals are the real experts. Collectively, they have more than 146 years experience living with a transplant! All of them would choose a transplant again. Although kidney transplantation is not for everyone, and sometimes it doesn't work, it should be given strong consideration.

Eivind Frost, from Montana, received a cadaver kidney on April 24, 1973, at University of Minnesota Hospital in Minneapolis (now Fairview–University Medical Center), and is doing fine. He tells us, "I've been feeling great for 26 years now."

Ken Carstens, from Minnesota, who received his kidney transplant at University of Minnesota Hospital in Minneapolis, on September 10, 1975, states, "It's been 24 years now, and I'd make the same choice again."

Karen Mayry, from South Dakota, received her kidney transplant at University of Minnesota Hospital in Minneapolis, on January 12, 1977. She declares, "I feel great!"

Betty Walker, from Missouri, received her transplant on July 13, 1978, at Yale–New Haven Hospital in Connecticut. In her words: "I was just existing on dialysis; and my transplant gave life back to me."

Lenny Ruygt, from California, received her kidney at Presbyterian Hospital (now Pacific Medical Center), in San Francisco, on St. Patrick's Day, March 17, 1980. She says: "On dialysis, I had no energy at all--I would sleep all but two hours of a day. After my transplant, I felt energized!"

Linda Bingham, from Ohio, who received a dual transplant (kidney and pancreas) at University Hospital in Cincinnati, Ohio, on December 10, 1981, says, "I feel great. I have been given a whole new life."

Ed Bryant, from Missouri, received his transplant on August 9, 1983, at University of Minnesota Hospital in Minneapolis. He says: "There is no comparison between life on dialysis, and how I've felt since my transplant."

Facts and Statistics

What is the success rate for kidney–transplant surgery? According to the "United States Renal Data System 1993 Annual Data Report," published by the National Institutes of Health, about 75% for a cadaver–donated kidney, better than 90% with a kidney donated by a living relative, with an overall success rate of better than 85%, better than 90% in some centers. UNOS data indicate the averages (based on graft survival, healthy kidney, five years after transplant) are improving. The National Institutes of Health reports that current "graft survival" (donated kidneys successfully functioning in the transplant recipient) rates are approximately the same, whether the recipient has diabetes or not.

What percentage of type I diabetics will face ESRD? Current statistics suggest between 20 and 25%, with many factors (genetic, ethnic, lifestyle) taken into account.

Must the ESRD patient be on dialysis before being considered for a transplant? NO! Although some behind–the–times nephrologists still believe so, Fairview–University Medical Center's Transplant Center, which pioneered diabetic kidney transplantation, recommends that once your physician has determined kidney failure is on the way, further delay could be harmful. The more time spent subjecting your body to the toxic excesses of kidney failure and the strains of dialysis, the greater the risk of serious complications like retinopathy and cardiovascular (heart) degeneration.

Your nephrologist should be able to tell you more about your options. For information about kidney transplantation, contact a reputable transplant center (there are more than 252 in the U.S. today), or the United Network for Organ Sharing, 1100 Boulders Park, Suite 500, Richmond, VA 23225; telephone: 1-800-243-6667; website: http://www.unos.org All UNOS information is available on the World Wide Web, but they will also send you pertinent information, by mail, on any three transplant centers you request, without charge.

For information or assistance with interpreting transplant center data, contact: Health Resources and Services Administration, Bureau of Health Resources Development, Division of Transplantation, Park Lawn Bldg., 5600 Fishers Lane, Room 7C-22, Rockville, MD 20857; telephone: (301) 443–7577; website: http://www.hrsa.gov/osp/dot

Renal failure is not a kiss of death. There are options, and at least one of them will be right for you. Keep your diabetes under good control, and your blood pressure down, to cut the risks--but if it happens (like it did to me), remember that with proper care you stand every chance of living just as long as you would have with healthy kidneys.

More Resources:

American Association of Kidney Patients, 100 South Ashley Drive, Suite 280, Tampa, FL 33602; telephone: 1–800–749–2257; website: http://www.aakp.org/aakpteam.html. Publishes the quarterly magazine "Renalife," with articles about dialysis and transplantation.

American Kidney Fund, 6110 Executive Boulevard, Suite 1010, Rockville, MD 20852; telephone: 1-800-638-8299. Offers financial aid ($200 limit), provides written and phone information on kidney diseases. website: http://www.kidneyfund.org

Diabetes Action Network, National Federation of the Blind, Renal Failure—Dialysis and Transplantation Support Committee, 811 Cherry Street, Suite 309, Columbia, MO 65201; telephone: (573) 875-8911. website: http://www.nfb.org/voice.htm. Offers information, encouragement, and support on a person–to–person basis for diabetics.

Fairview University Medical Center, Patient Education Department, 420 Delaware St. SE, Box 603, Minneapolis, MN 55455; telephone: (612) 273-3354. Offers "The Transplant Handbook," prepared for patients facing kidney transplantation. Available in standard print or audiocassette, cost: $12 (print) or $30 (6 tapes).

National Diabetes Information Clearinghouse, 1 Information Way, Bethesda, MD 20892; telephone: (301) 654-3327; website: http://www.niddk.nih.gov/health/ diabetes/diabetes.htm Provides free and low–cost publications on aspects of diabetes.

National Foundation for Transplants, 1102 Brookfield, Suite 202, Memphis, TN 38119; telephone: 1–800–489–3863; website: http://www.transplants.org. Advice and instruction on fund–raising to cover transplant costs on any organ.

National Kidney Foundation, Inc., 30 E. 33rd Street, New York, NY 10016; telephone: 1-800-622-9010; website; http://www.kidney.org. Provides services such as: doctor referrals, patient peer counseling, education, medication programs, transportation, and financial services.

National Kidney and Urologic Diseases Information Clearinghouse, 3 Information Way, Bethesda, MD 20892; telephone: (301) 654-4415. Provides free information booklets such as #KU–50: "End Stage Renal Disease, Choosing a Treatment That's Right for You," and #KU-134: "Eat Right to Feel Right on Hemodialysis." Two new publications will be "dictionaries," of urologic diseases, and of kidney diseases. Contact NKUDIC for availability information. All publications are downloadable from their website: http://www.niddk.nih.gov/health/kidney/nkudic.htm

National Transplant Assistance Fund, PO Box 258, Bryn Mawr, PA 19010; telephone: 1-800-642-8399; website: http://www.transplantfund.org Helps patients set up fundraising programs to cover transplantation costs on any organ; also offers small emergency grants.

The Patient Travel Service, Fresenius Medical Care, Two Ledgemont Place, 95 Hayden Ave., Lexington, MA 02420; telephone: 1-800-634-6254. Provides referrals and information for dialysis patients wishing to travel anywhere in the world, who need dialysis facilities. Also offers free brochure, "On the Road...Again," a how-to guide for arranging dialysis away from home.

PhRMA, Pharmaceutical Research and Manufacturers of America, Publications Department, 1100 15th Street NW, 9^th Floor, Washington, DC 20005; telephone: (202) 835-3400; website: http://www.phrma.org. An industry association, PhRMA publishes a catalog of member companies offering free or low–cost drugs/medications for the indigent, available for download from their website.

Stadtlanders Pharmacy, 600 Penn Center Boulevard, Pittsburgh, PA 15235; telephone: 1-800-238-7828; website: http://www.stadtlanders.com Medication, delivery, and insurance billing; organ transplant recipients receive free express delivery of medication, anywhere in the U.S.A.

United States Renal Data Survey, USRDS Coordinating Center, 914 S. 8th Street, Suite D206, Minneapolis, MN 55404; telephone: (612) 347-7776; website: http://www.usrds.org

Noven Pharmaceuticals, of Miami, Florida, is one of the companies exploring this technique, the medicated insulin patch. Its president, Steven Sablotsky, commented, "Research continues... If this proves to be a new way of delivering insulin, commercialization would still be several years away."