This resource list is for readers interested in learning more about kidney diseases, how the kidney functions, the diagnosis and management of kidney diseases, the principles of dialysis and kidney transplantation, and other topics not covered in detail in this book. Readers who wish to get involved in a community of patients and health care providers can use the list to identify and contact organizations whose sole purpose is to provide support to patients. Some of these organizations are advocates for patients and include congressional lobbying as part of their activities on behalf of patients.
The list of resources and organizations is not exhaustive but does include sources that I found most informative and authoritative.
The Internet is a seemingly unlimited source of information. Websites provide information and support, and scientific databases link to primary research articles on kidney diseases. The National Library of Medicine at the National Institutes of Health provides the best databases; see www.nlm.nih.gov. The most useful databases are PubMed and the NLM Gateway. PubMed is easier to use for simple searches; begin your searches at www.ncbi.nlm.nih.gov/PubMed.
The website of the National Institute of Diabetes, Digestive, and Kidney Diseases includes a directory of Kidney and Urologic Diseases Organizations; see www.kidney.niddk.nih.gov/resources/organizations.htm. Several of these organizations exist for the sole purpose of supporting patients with specific diseases. Here are some of them.
American Diabetes Association
Attn: National Call Center
1701 North Beauregard Street
Alexandria, VA 22311
Phone: 1-800-DIABETES (1-800-342-2383)
Website: www.diabetes.org
According to their website, the main mission of the American Diabetes Association is “to prevent and cure diabetes and to improve the lives of all people affected by diabetes.” The site has extensive information for patients and professionals about diabetes, management of the disease, preventative measures, weight loss, and statistics. The American Diabetes Association also provides grants to help support the salaries of young investigators doing research on diabetes.
American Heart Association
National Center
7272 Greenville Avenue
Dallas, TX 75231
Phone: 1-800-242-8721
Email: Through the website
Website: www.americanheart.org
The website of the American Heart Association provides information on many aspects of cardiovascular disease, including hypertension. One division of the American Heart Association is the American Stroke Association, which provides information on warning signs, prevention, and care for stroke patients.
American Stroke Association
National Center
7272 Greenville Avenue
Dallas, TX 75231
Phone: 1-888-478-7653
Email: Through the website
Website: www.strokeassociation.org
No organization is devoted specifically to glomerulonephritis. The website www.mayoclinic.com provides good information on the disease. In addition, two organizations exist specifically to address two causes of glomerulonephritis: the Alport Syndrome Foundation and IgA Nephropathy Support Network.
Alport Syndrome Foundation
1608 E. Briarwood Terrace
Phoenix, AZ 85048-9414
Phone: 480-460-0621
Website: www.alportsyndrome.org
Alport syndrome is a genetic kidney disease. The mission of the Al-port Syndrome Foundation is “to educate and support patients and families that have been affected by Alport Syndrome with the goal of funding research to find more effective treatment protocols and a cure.”
IgA Nephropathy Support Network
89 Ashfield Road
Shelburne Falls, MA 01370
Phone: 413-625-9339
Website: www.igansupport.org/index.html
The mission of the IgA Nephropathy Support Network is “to assist patients with IgA nephropathy and their families; to serve as a clearinghouse for dissemination of information about IgA nephropathy; and to promote research for a possible cure.” The network provides newsletters and pamphlets.
PKD Foundation
8330 Ward Parkway, Suite 510
Kansas City, MO 64114-2000
Phone: 1-800-PKD-CURE
Email: pkdcure@pkdcure.org
Website: www.pkdcure.org
The best place to obtain useful and reliable information on polycystic kidney disease (PKD) is through the PKD Foundation, which provides educational material for people with PKD, their families, and other interested parties. In addition, it funds grants to researchers who are working to identify the causes of PKD as well as potential treatments and cures for this inherited kidney disease. The PKD Foundation is the only organization in the world that addresses PKD exclusively. I did not discuss ARPKD in this book because most patients have ADPKD. For readers interested in ARPKD, a place to start learning more is found at the link on the PKD Foundation website.
National Kidney Foundation
30 East 33rd St., Suite 1100
New York, NY 10016
Phone: 1-800-622-9010
Email: info@kidney.org
Website: www.kidney.org
The National Kidney Foundation is an organization that provides exceptionally valuable information on kidney diseases in general, as well as on dialysis and transplantation. The NKF offers numerous pamphlets describing many different aspects of kidney failure. This is a useful site for learning basic information about kidney failure.
American Association of Kidney Patients
3505 E. Frontage Rd., Suite 315
Tampa, FL 33607
Phone: 1-800-749-2257
Email: info@aakp.org
Website: www.aakp.org
The American Association of Kidney Patients has a site that is devoted to patient issues. According to their website, the organization “exists to serve the needs, interests, and welfare of all kidney patients and their families. Its mission is to improve the lives of fellow kidney patients and their families by helping them to deal with the physical, emotional, and social impact of kidney disease.” The website has extensive information on all aspects of kidney disease.
As we learned in chapter 5, it can be difficult for a person with kidney disease to eat a proper diet and maintain good nutrition, because of a limited list of permitted foods. This is especially true for anyone on hemodialysis. The American Association of Kidney Patients publishes a useful brochure that lists the sodium, potassium, protein, and caloric content of a wide variety of foods. This brochure can help you in selecting meals that meet the requirements of hemodialysis. You can download it from www.aakp.org/brochures/nutrition-counter.
People on dialysis, especially peritoneal dialysis, generally must have protein supplementation. Liquid supplements designed for dialysis patients are available, but they are expensive. For me, a better alternative was a protein powder derived from egg whites. You can purchase powdered egg whites at www.optimumnutrition.com or at a local GNC. The latter source is often cheaper. Note: do not buy whey protein. Derived from dairy products, the product has a high phosphorus content.
The PKD Foundation recently published a cookbook entitled Brilliant Eats: Simple and Delicious Recipes for Anyone Who Wants to be KidneyWise. This cookbook is suitable for anyone suffering from chronic kidney disease from any of the major causes. It identifies recipes suitable for people in pre-dialysis, hemodialysis, and peritoneal dialysis, and for people who are considering or preparing for transplant. The book can be purchased at www.kidneywise.org.
Because there is a shortage of kidneys available for transplantation, efforts are under way to identify more living donors. Several organizations have become increasingly active in matching living donors.
Alliance for Paired Donation
3661 Briarfield Boulevard, Suite 105
Maumee, OH 43537
Phone: 419-866-5505
Email: admin@paireddonation.org
Website: www.paireddonation.org
Through a nationwide computer-matching program, the Alliance for Paired Donation helps arrange for living donations between pairs of potential donors not compatible with the patients with whom they originally intended to donate (see chapter 7). The organization has been in existence for only a few years, but as of this writing, it has arranged seventeen paired donations. Although it does not have agreements with hospitals in all fifty states, it is working to accomplish full coverage. Registering is easy and free.
National Kidney Registry
PO Box 460
Babylon, NY 11702-0460
Phone: 1-800-936-1627
Email: administration@kidneyregistry.org
Website: www.kidneyregistry.org
The National Kidney Registry was founded “to save and improve the lives of people facing kidney failure by increasing the quality, speed, and number of living donor transplants in the world.” Although the organization only began its efforts in 2007, it has ambitious plans over the next five years. It wants to provide up to 10,000 living donations per year for those needing a kidney transplant. The cost is free for donors and recipients who work through one of the participating centers. Since February 2008, NKR has facilitated eighty-eight transplants, according to its website.
MatchingDonors.com, Inc.
766 Turnpike Street
Canton, MA 02021
Phone: 781-821-2204
Email: contactus@matchingdonors.com
Website: www.matchingdonors.com
According to its website, the organization was “created to give people in need of transplant surgery an active way to search for a live organ donor. Our goal is to increase the number of transplant surgeries and improve awareness of live organ donation.” As the name implies, MatchingDonors.com, Inc., attempts to match prospective living donors with those in need of a transplant. As of January 2010, 1,495 people who are willing to donate kidneys have been listed, and 240 people have registered in need of one. More than 100 transplants have been completed.
Being listed as a patient on the site involves paying a fee. The amount depends on the length of the listing. It ranges from $295 for a monthly membership to $595 for a lifetime membership. Currently, Medicare and insurance companies do not reimburse this expense. For those who cannot afford the fee, Matching Donors claims that it waives it.
If you pursue living donations through any of these websites, you must do so in close consultation with your transplant surgeon. It is not clear from the sites whether those involved in the organization adequately screen potential donors for possible medical conflicts or other disqualifying factors.
The costs for dialysis and kidney transplantation are substantial. Although some private insurance provides coverage, not all insurance does, and many patients have no private insurance. A major source of funding for dialysis and transplantation comes from the federal government through Medicare and Medicaid. Medicare can provide significant assistance to those in need who meet eligibility requirements. Useful information can be found in the brochure “Medicare Coverage of Kidney Dialysis and Kidney Transplant Services” available at the Medicare website at www.medicare.gov/Publications/Pubs/pdf/10128.pdf. For further information, you can call Medicare at 1-800-MEDICARE (1-800-486-4028). For Medicaid, a joint federal and state program, benefits vary depending on the state and eligibility requirements. Check with your state agency for further information.
The American Kidney Fund provides funds to defray expenses associated with dialysis and transplantation that insurance does not cover. The Fund also provides brochures about kidney function and kidney diseases and educational seminars.
American Kidney Fund
6110 Executive Blvd., Suite 1010
Rockville, MD 20852
Phone: 1-800-638-8299
Email: www.kidneyfund.org/about-us/national-headquarters
Home page: www.kidneyfund.org
Other organizations exist that provide help for transplant costs, including the cost of traveling to the transplant center. A website with a list of some of these organizations and links to them can be found at www.classkids.org/library/resourc/fundraising.htm.
Finally, county services provided by local governments or private organizations also assist in covering such costs of dialysis as transportation, as well as transplantation costs. Check with the social worker at your dialysis or transplant center for guidance.