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KIDNEY DISEASE:

PREVENTION, DIALYSIS, OR TRANSPLANTATION

by Ed Bryant

This article appeared in Voice of the Diabetic, Vol. 17, No. 3, Summer
2002 edition, published by the Diabetes Action Network of the National
Federation of the Blind. Updated May 2005.

I have a special interest in renal failure, as I have had a kidney
transplant for almost 21 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. Proper diet,
exercise, and appropriate medications can lower your cholesterol levels.
Consult a Registered Dietitian (RD) for advice; kidney failure imposes unique
constraints.

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.

Be sure to ask your doctors if any other conditions you are experiencing
could affect your kidneys. People dealing with rheumatic issues, like Lupus,
can experience kidney damage. Be careful not to look so closely at your
diabetes that you miss how other problems can affect your body.

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 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).
This medication is already used in Europe. 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, MD, 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, 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."

"Will you survive longer once you get a transplant?" asks Marianna
Markel, MD, 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. Take heart; it really is getting better.

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 125 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.

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; 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, 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, MD 20857; telephone: (301)
443-7577; website: (http://www.hrsa.gov/osp/dot). This agency also
maintains the website: (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; 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.

CVS Procare, (formerly Stadtlanders) 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. They offer the book-length document "Waiting For a
Transplant," as a free download from their website.

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. website:
http://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; website: 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
website offers information on all types of transplant surgery.

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 other publications are
"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;
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; 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.

Transweb: Is an informational website 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. Website:
http://www.transweb.org

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