KIDNEY FAILURE, DIALYSIS, AND TRANSPLANTATION

by Ed Bryant

I have a special interest in renal failure, as I have had a kidney transplant for more than 13 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.

Many long-term diabetics face the prospect of kidney failure, End Stage Renal Disease (ESRD). For them, there are three options for treatment. 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, there are more than 189,954 kidney patients undergoing dialysis in the United States today. In 1992, the last year for which Centers for Disease Control (CDC) figures are available, there were 19,790 new cases among persons with diabetes, and 56,059 diabetics were undergoing dialysis or transplantation treatment that year. U.S. Health Care Financing Administration statistics show that about 30% of all individuals facing dialysis are there because of diabetes complications, 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 dialysed; they simply sickened and died. Those who did dialyses 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.

How is kidney failure 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 reaches 6 or above. However, some diabetics will experience kidney failure before that point. There is much variation between individuals, and the actual range is 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 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. This test measures how much creatinine comes out in a 24 hour period.

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. Captopril (trade name Capoten), a common blood pressure medication, in carefully monitored tests, significantly reduced further kidney degeneration. The FDA has recommended use of Captopril for 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. Note: Use of "ACE inhibitors" such as Captopril, for keeping blood pressure down in the normal range, carries many benefits, such as reduced rate of kidney failure, and less strain on eyes and cardiovascular system.

Aminoguanidine is the second 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).

Another possible option (currently under lab investigation) is use of PKC-beta II inhibitors, chemical "blockers" that resist the complication-causing effects of high blood glucose. It will be years before we know if this approach has merit. Other options are certain to materialize, both for those with impaired kidney function and for those whose kidneys have failed.

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 damage the kidney's filters, leading to scarring, blockage, and diminished renal function. Diabetes is the leading cause of kidney disease, and each year over 15,000 diabetics will either need a kidney transplant, or to start some form of dialysis.

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, 30% more time in the hospital than does the non-diabetic dialysis patient, according to USRDS figures.

Some patients choose CAPD (continuous ambulatory peritoneal dialysis) mr its variant, CCPD (continuous cycling peritoneal dialysis), both of which can be carried out at home, without an assistant. CAPD 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. CCPD 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.

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. Daniel M. Canafax, PharmD, FCCP, Professor, College of Pharmacy, University of Minnesota, reports that Prograft (FK 506, tacrolimus), from Fujisawa, and Cellcept (RS 61443, mycophenolate mofetil) by Roche/Syntex, have been approved by the FDA, and Deoxyspergualin (DSG), by Bristol-Myers-Squibb, and Rapamycin (sacrolimus, Rapamune), by Wyeth/Ayerst, are currently being tested. The risk of 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 no consequence if my surgeon has only done fifteen 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 $90 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? Do you correspond with this physician?

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?

Here's what some folks have said:

Eivind Frost, from Montana, received a cadaver kidney on April 24, 1973, at University of Minnesota Hospital in Minneapolis, and is doing fine. He tells us, "I've been feeling great for 23 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 21 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."

Eric Knoeppel, from Missouri, received his kidney at Clarkson Memorial Hospital, in Omaha, Nebraska, on July 5, 1981. He says, "After my transplant, it was nice to be able to go back to work! Before, I was dependent on government assistance."

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."

These folks know what they're talking about. Collectively, they have more than 113 years experience living with kidney transplants! All of them would choose a transplant again. Although kidney transplantation is not for everyone, it should be given strong consideration.

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.

What percentage of type I diabetics will face ESRD? Current statistics suggest 20%.

Must the ESRD patient be on dialysis before being considered for a transplant? NO! Although some behind-the-times nephrologists still believe so, University of Minnesota 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. And, the success rate for diabetics needing kidney transplantation is approximately the same as for non-diabetic transplant recipients. People with diabetes tend to take better care of themselves than does the general public.

Your nephrologist (kidney specialist) should be able to tell you more about your options. For information about kidney transplantation, contact a reputable transplant center (there are more than 239 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. For information or assistance with interpreting transplant center data, contact: Health Resources and Services Administration, Bureau of Health Resources Development, Division of Organ Transplantation, 5600 Fishers Lane, Room 11A22, Rockville, MD 20857; telephone: (301) 443-7577.

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. I've had my transplant 13 years, and I'm planning on being here a long time more.

More Resources:

American Association of Kidney Patients, 100 South Ashley Drive, Suite 280, Tampa, FL 33602; telephone: 1- 800-749-2257. Publishes the quarterly magazine Renalife, with articles about dialysis and transplantation.

American Kidney Fund, 6110 Executive Boulevard, Suite 110, Rockville, MD 20852; telephone: 1-800-638-8299. Offers financial aid ($200 limit), provides written and phone information on kidney diseases.

National Diabetes Information Clearinghouse, 1 Information Way, Bethesda, MD 20892-3560. Provides free and low-cost publications on aspects of diabetes.

National Kidney Foundation, Inc., 30 East 33rd Street, New York, NY 10016; telephone: 1-800-622-9010. 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 20892-3580. Provides free and low cost publications about kidney and bladder diseases. Their booklet KU-50 is "End Stage Renal Disease, Choosing a Treatment That's Right for You."

National Organization for State Kidney Programs; telephone: 1-800-733-7345. Provides information on different state programs that would help people pay for kidney failure costs.

National Transplant Assistance Fund; telephone: 1-800- 642-8399; World Wide Web URL: http://www.LibertyNet.org/~txFund/. Helps patients set up fundraising programs to cover transplantation costs on any organ; also offers small emergency grants.

Organ Transplant Fund, 1102 Brookfield, Suite 202, Memphis, TN 38119; telephone: 1-800-489-3863. Advice and instruction on fund-raising to cover transplant costs on any organ.

PhRMA, Pharmaceutical Research and Manufacturers of America, Publications Department, 1100 15th Street NW, Washington, DC 20005; telephone: (202) 835-3400. A catalog of member companies offering free or low-cost drugs/medications for the indigent.

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

Stadtlanders Pharmacy, 600 Penn Center Boulevard, Pittsburgh, PA 15235-5810; telephone: 1-800-238-7828. Medication, delivery, and insurance billing; organ transplant recipients receive free express delivery of medication, anywhere in the U.S.A.