by Ed Bryant
Photo included; Caption: Ed Bryant
I have a special interest in renal failure, as I have had a kidney transplant for almost 19 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. Consult a Registered Dietitian (RD) for advice.
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. Ask your health care team for advice here.
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. A manual, titled: THE PREVENTION AND TREATMENT OF COMPLICATIONS OF DIABETES MELLITUS, published 1991 by the Centers for Disease Control (and now available on the Web, at: http://www.cdc.gov/diabetes/pubs/complications/index.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."
The document continues: "In patients with albuminuria, blood pressure regulation is of critical importance in slowing the progression to renal failure. Other strategies that may slow the progression to renal disease include limiting the patient's protein intake, maintaining good glycemic control, promptly treating urinary tract infections, and avoiding potentially nephrotoxic drugs and radiographic dyes." (Certain dyes used for x-rays of the circulatory system can further harm damaged kidneys.)
As the above quote states, once kidney disease is diagnosed, 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 perhaps 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 progressing to 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's body 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 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 positive 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 (kidney specialist) 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 diabetic 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.
Then 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 options. 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 392,847 Americans have ESRD, and 168,663 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 42.9% 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 (#2 is hypertension). Long-term diabetics often have cardiovascular and blood pressure problems as well, 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
traveling. 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.
An article, published November 1999 in the NEW ENGLAND JOURNAL OF MEDICINE, shows the longevity gains have been major. The average graft survival (how long the kidney remained functional, not the patient) was, from a living donor, 17 years, in 1988. Per 1996 statistics, it is now 36 years. The typical cadaver kidney transplanted in 1988 lasted 11 years, but in 1996, the life expectancy of the organ was nearly 19 years. The study, led by Dr. Sundaram Hariharan, at the Medical College of Wisconsin, funded by the National Institutes of Health, concludes the improvement is largely due to the development of better anti-rejection medications.
In October 1996, a study by Christopher E. Attinger, M.D., and colleagues at Georgetown University School of Medicine, in Washington, DC, reported that diabetics who had a kidney transplant healed twice as fast as those on dialysis, or experiencing chronic renal failure. Alongside the better healing rate, transplant patients' average hospital stay, for treatment of foot wounds, was half as long.
"Fifty percent of all kidney transplantations taking place today are into diabetics," states Giacomo Basadonna, M.D., Ph.D., 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."
"Will you survive longer once you get a transplant?" asks Marianna Markel, M.D., Director of Transplant Nephrology at SUNY Health Science Center, in Brooklyn, New York. "If you're a diabetic, it looks like the answer may be yes, perhaps because certain substances which build up in the blood of diabetics (advanced glycosylation end-products) are not removed well by dialysis, and may contribute to a shortened lifespan for diabetic patients on dialysis."
One of the areas where we are seeing rapid improvement is immunosuppressive medication. There is now a generic competitor to Novartis' Neoral (Eon Labs' Cyclosporine Softgel Capsules, USP Modified). The traditional triple 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 a number of others are being tested. The risk of organ rejection is always present, but each new development increases the chances your body will successfully accept the transplant
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 . . .)
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 135 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.
Ken Carstens, from Minnesota, who received his kidney transplant at Fairview-University Medical Center, in Minneapolis, Minnesota, on September 10, 1975, states, "It's been 26 years now, and I'd make the same choice again."
Karen Mayry, from South Dakota, received her kidney transplant at Fairview-
University Medical Center, in Minneapolis, Minnesota, 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 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 her kidney transplant 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 Fairview-University Medical Center, in Minneapolis, Minnesota. 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 1999 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 1 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 kidney transplant center (there
are, at press time, 245 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;
Web site: http://www.unos.org. All UNOS information
is available on the World Wide Web, but they will also send you pertinent information,
by mail, about transplant centers in your area or nationwide. Contact them at
the above address, and ask them for the "kidney transplant package."
They also offer the brochure "What Every Patient Needs to Know," and
an organ-donor card for you to carry.
For information or assistance with interpreting transplant center data, contact: Health Resources and Services Administration, Bureau of Health Resources Development, Division of Transplantation, OSP, Park Lawn Bldg., 5600 Fishers Lane, Room 7C-22, Rockville, M.D. 20857; telephone: (301) 443-7577; Web site: http://www.hrsa.gov/osp/dot. This agency also maintains the Web site: www.organdonor.gov, which offers many useful links and much pertinent information.
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; Web site: 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, M.D. 20852; telephone: 1-800-638-8299. Offers financial aid ($200 limit), provides written and phone information on kidney diseases. Web site: www.kidneyfund.org.
CVS Procare, (formerly Stadtlanders) 600 Penn Center Boulevard, Pittsburgh, PA 15235; telephone: 1-800-238-7828; Web site: www.stadtlanders.com. Medication, delivery, and insurance billing; organ transplant recipients receive free express delivery of medication, anywhere in the U.S.A. They offer the book-length document "Waiting For a Transplant," as a free download from their Web site.
Diabetes Action Network, National Federation of the Blind, Renal Failure-Dialysis and Transplantation Support Committee, 1412 I-70 Drive SW, Suite C, Columbia, MO 65203; telephone: (573) 875-8911. Web site: www.nfb.org/voice.htm. Offers information, encouragement, and support on a person-to-person basis for diabetics. Note: Copies of this article, and others, are available, free, in large print, or on 4-track audiocassette.
Fairview University Medical Center, Patient Education Department, 420 Delaware St. SE, MMC 603, Minneapolis, MN 55455; telephone: (612) 273-3354; Web site: www.fairviewtransplant.org. Offers THE TRANSPLANT HANDBOOK, prepared for patients facing kidney transplantation. Available in standard print or audiocassette, cost: $12 (print) or $30 (6 tapes). Their Web site offers information on all types of transplant surgery.
National Diabetes Information Clearinghouse, 1 Information Way, Bethesda, M.D.
20892; telephone: (301) 654-3327; Web site: 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; Web site: 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; Web site: 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, M.D. 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 other publications are "dictionaries," of urologic diseases, and of kidney diseases. Contact NKUDIC for availability information. All publications are downloadable from their Web site: www.niddk.nih.gov/health/kidney/nkudic.htm
National Transplant Assistance Fund, P.O. Box 258, Bryn Mawr, PA 19010; telephone: 1-800-642-8399; Web site: 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; e-mail: [email protected]. 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, 9th Floor, Washington, DC 20005; telephone: (202) 835-3400; Web site: 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 Web site.
Transweb: Is an informational Web site that provides an index and links to a great deal of information about transplantation, patient education, donor and recipient issues and other items of concern. Web site: www.transweb.org
United States Renal Data Survey, USRDS Coordinating Center, 914 S. 8th Street,
Suite D206, Minneapolis, MN 55404; telephone: (612) 347-7776; Web site: www.usrds.org