FAQ
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Dialysis_Support Frequently Asked Questions (FAQ)
What exactly is DIALYSIS_SUPPORT?
An end-stage renal disease (ESRD) discussion and support group
A Source and Reference Guide for Frequently Asked Questions (FAQ)
Host Services provided by: Egroups.com
http://www.egroups.com/group/dialysis_support/
This FAQ is updated/revised as more valuable information becomes available.
The newest (most recent) version will always be downloadable at:
http://www.renalnetwork.org/vault/faq.txt
Suggest a friend to join DIALYSIS_Support -- it's FREE!
Send a message TO: dialysis_support-subscribe@egroups.com
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In all aspects of knowledge gathering, a guide helps to easily glean the
resources for resolving potential
problems quickly and easily.
The DIALYSIS_Support mail list believes knowledge is power. This
Source Guide is meant to help you find information about
end-stage renal disease (ESRD). The goal is to assist people with ESRD
improve their quality of life by making wise choices and asking good
questions. Many people helped to put this guide together, thus it is a
multitude of persoanl experiences rendered on behalf of pooled knowledge
into a FAQ document for you to utilize!
PLEASE NOTE: This Guide is *NOT* a substitute for the advice of your
doctor who knows your case and medical status best. Do not make any
treatment changes on the basis of this guide without first talking to
your healthcare team. Medical advice, especially over-the-internet,
should never take priority over the expressed direction received from
a qualified physician attentive to the
patient's personal medical history.
The subjects discussed in this guide are for the most part, specific for the
status of renal dialysis in the United States. If anyone would be interested
in providing information helpful to people of other countries, please let me
know.
This guide is set up in categories, and when available, offers URLs which
may provide more valuable and specific information. Please look for the
category you are interested in or search for the word or phrase you are
interested (case insensitive). If you have a concern not yet discussed in
this FAQ guide, maybe it can be added in
the future.
Please send questions or comments to: <dialysis_support-owner@egroups.com>
The National Kidney and Urologic Diseases Information Clearinghouse has
published two new illustrated dictionaries. The "Kidney Diseases Dictionary"
and "the Urologic Diseases Dictionary" define terms associated with kidney
and urologic diseases. Single copies of the dictionaries are available free
of charge (US). A package of 25 will cost $25 (US). Call (301)654-4415 or
fax (301)907-8906 to request your copy.
FAQ
MENU
I. Dialysis
1. Aids
a. Dry Mouth Relief
b. Dressings
1. * Tagaderm
2. 3M Clear Seal
3. SureSeal Bandaids
c. Products and Services
d. High Tech Aids
e. Treatment Accessible Clothing
f. Elastic Arm Sleeve
g. Sur-Fit Stomahesiv (Bathing and PD)
h. PD Belt
i. PD Products
j. Tube-Pak
k. Reducing the "Fear and Pain" of Needle Sticks
1. Emla Creme
2. * Hypnosis
3. * Lidocaine by Injection
4. * Liquid Spray Lidocaine
5. Topicaine Creme
2. Cookbooks
a. Renal Cookbook Suggestions
b. Web Recipes
c. URL for Locating Nutritional Food Values
3. Magazines
a. aakpRENALIFE
b. Dialysis and Transplantation
c. For Patients Only
d. Nephrology News and Issues
4. Modalities/Treatment Options
a. Hemodialysis
1. In-Center
2. Home
3. Nocturnal
b. Peritoneal Dialysis (PD)
1. CAPD Continuous Ambulatory PD
2. CCPD Continuous Cycling PD
3. APD Automated PD
4. IPD Intermittent PD
c. Kidney Transplant
d. No Treatment
II. Insurance
a. Dialysis and Kidney Medicare Supplement Booklet
b. AARP Medicare Supplemental Insurance
c. Medical Billing
d. Beneficiary Right to Itemized Statement
for Medicare Items and Services
e. etermcom: one year post kidney
transplant life insurance policy
III. Organizations
a. American Association of Kidney Patients (AAKP)
b. American Kidney Fund (AKF)
c. Council of Nurses and Nephrology Technicians (NANT)
d. National Kidney Foundation (NKF)
IV. Pharmacy
1. Assistance Programs
a. Company Handles Processing for FREE Medications
b. Indigent Programs (U.S.A. Senate Website)
c. * Amgen Safety Net
d. WWW Free and Low Cost Prescription Drugs
2. Online Physicians Desk Reference
3. Products
a. * Calcijex
b. Carnitor (L-Carnitine)
c. Epogen
d. Nephroderm
e. Home Remedy Salve for Relieving Itchy Skin
f. Phos-Lo
g. Psyllium (for resolving constipation)
h. Protein Supplement
i. Renagel
j. Zemplar
V. Rehabilitation
a. Life Options Rehabilitation Program
b. Vocational Rehabilitation Services by State
c. The National ADA Resource Center
VI. Sleep Disorder
a. Sleep Disorder Information Resources
b. OnLine Resources
VII. Travel and Vacation
a. Searchable Online Database of USA Dialysis Units
b. ADA Vacations Plus/Medical Travel
c. Europe Access Information
d. Fresenius Company in Germany
e. The International Dialysis
Organization (IDO)
VIII. Article Topics
a. AV Fistula
b. * Bone Disease / Phosphorus / PTH
c. BUN & Creatinine Explanation
d. Creatinine
e. * Conflict Resolution, Grievance Procedures, Networks, etc.
f. * Cough Due to Blood Pressure Medication
g. * Cold While on Dialysis
h. Diabetic Blood Test HbA1c
i. Golden Access - Disabled Free Pass to Use Public Lands
j. * Heparin Allergy (Pork or Beef)
k. Insensible Fluid Loss
l. Medic-Alert Saving Lives!
m. PD and Shoulder Pain
n. Pregnancy and ESRD
o. Restless Leg Syndrome
p. Skin Ulcers
q. Soda Phosphorus (PO4) "Values"
r. Transplantation and Antibodies
s. UNOS Regions Listed By State
t. What Is My Position on the UNOS Waiting List?
ut. What is Kinetic modeling?
* = indicates topics under development/research
DIALYSIS AIDS
DRY MOUTH RELIEF
Look for mouth products under the label of BIOTENE.
Dry Mouth is not uncommon in many chronic illness conditions,
especially due to some of the medications. For dialysis patients
restricting their intake of fluid, these products may have some
impact towards resolving the urge to
drink fluids.
3M Clear Seal dressings (with a pad) are less expensive than regular
Tegaderm. The 3M catalog number is 580-15 34-7041-1036-9 (for the size
Small). The box says they are water resistant, but doesn't say "waterproof".
(USA) (800)537-2191
SureSeal Bandaids
Medical West Healthcare Center
444 South Brentwood Blvd.
Clayton, MO 63100
(314)725-1888
PRODUCTS AND SERVICES GUIDE
http://www.medicalnews.com/nephrology/products.htm
Catalog displaying high tech aids. The
Company is:
"Your World is Our World"
1877 N.E. Seventh Avenue
Portland, Oregon 97212.
(800)443-7091
e-mail: ccs@caremedical.com
To order a catalog, proceed to: http://www.caremedical.com
Treatment Accessible Clothing:
Jo's Alterations
5202 King Charles
Austin TX 78724
(512)926-4375
Upon request, a catalog will be sent.
Elastic Arm Sleeve
I have become concerned about the Gortex graft in my right forearm about
keeping it from getting nicked while I wear short sleeves for the summer.
I went to a medical supply store and bought a beige elastic sleeve. I bought
an extra large so it wouldn't be too tight, yet tight enough to stay on. I
love it! I feel so much better knowing
my arm is better protected.
I was worried when I was informed I might not be able to take baths. My
CAPD nurse has since given me "Sur-Fit Stomahesive" flexible flanges, from
ConvaTec. This fits over my catheter and adheres to my skin. I then attach
a latex sleeve to this which holds my catheter. This allows me to take
baths. The flange usually stays water-tight for about 2 to 3 weeks before it
needs changing.
The "Sur-Fit" catheter sheath is manufactured by:
ConvaTec
Division of ER Squibb & Sons, Inc.
Princeton, NJ, 08543, U.S.A.
Tel: (800)422-8811
In Canada: (800)465-6302
There is also a cloth sheath available to cover the PD tubing valve
minimizing the abrasive
"rubbing." Call toll-free (800)567-2226.
PD Belt
JMS Corp.
Formerly: Medical Engineering Enterprises
P.O. Box 2398
Poquoson, Virginia 23662
(800)973-0355 ext 100
PD Products and Medical Devices for
Peritoneal Dialysis
PD Devices
PD DIALYSATE WARMER
http://www.phippsbird.com/warmer.html
This product is called a dialysate warmer and is also manufactured in the
US. The company is PHIPPS & BIRD located in Richmond, VA. The company can
be reached at (800) 955-7621 or by
email: <phippsbird@aol.com>.
TUBE-PAK
I use a tube-pak to hold the tubing and catheter. It is a belt worn around
the abdomen and has a pocket that holds the extra tubing and catheter. Mine
is a TUBE-PAK #1-920 (fits 30" to 45" waist size) available from:
NelMed Corp.
35 Hawthorne Street
North Attleboro, MA 02760
(508)699-9353
Customer Service: (800)841-4604
FAX: (508)699-0215
My supplier is CAPD Support Products, LLC. (619)224-9062 FAX (619)224-8257.
It is made from 2" elastic webbing, with a pocket and 2 - 1" velcro tabs
for securing the catheter. Very
comfortable, I almost forget it is there!
Peritoneal Catheter Support Specialists Inc.
... now offers the CAPD Support Undergarment. This product is designed to
alleviate the irritation caused from taping for CAPD patients. The Support
Undergarment secures and conceals the capped off CAPD tube when not in use.
It is available in cotton/lycra or nylon spandex and is custom fitted for
each patient. For more information, call
(800)973-0355 Ext. 100.
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Pain, of any sort, is never easy to accept. Learning of ways others
have come to overcome it certainly helps
to reduce potential fear.
REDUCING NEEDLE STICK "FEAR AND
PAIN"
EMLA Creme Keyword: emla
EMLA (Eutectic Mixture of Local Anesthetic) is a topical absorbed local
anesthetic mixture and is available by prescription only. Ask your doctor.
EMLA consists of: Lidocaine 2.5% and Prilocaine 2.5% cream. Available as
topical cream or in stick-on disc patch for easy local specific site
delivery. For use on normal intact skin
and not for use on mucous membranes.
http://www.emla-usa.com Phone (800)262-0460
EMLA is a registred trademark of Astra AB.
(copyright) 1999 AstraZeneca LP. All Rights Reserved.
* Hypnosis
* Lidocaine by Injection
* Liquid Spray Lidocaine
TOPICAINE
http://www.dermascan.com/topicaine.htm
Specially formulated to penetrate intact skin, for the prevention and relief
of pain caused by blood drawing and dialysis procedures. Available without a
prescription.
To order within the USA: (800)677-9299; or e-mailto:dermascan@dermascan.com
FAX (415)969-8319. All major credit cards accepted: Visa, Mastercard, etc..
Or send your order and check to the order of:
DermaScan Laboratories Inc.
P.O. Box 4066
Mountain View, CA 94040; California,
U.S.A.
---------- ---------- ----------
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Eating can still be fun, enjoyable and nutritious, especially when renal
cookbooks are available to make the preparation delicious and easy to
follow.
COOKBOOKS
Carbohydrate and Sodium Controlled Recipes
(for Diabetic Hemodialysis and Peritoneal Dialysis patients) by Council on
Renal Nutrition/Northern California/Nevada; Marilyn Mayfield, MS, RD, El
Camino Dialysis Services, 2500 Grant
Road, Mountain View, CA 94039.
Creative Cooking For Renal Diets
by The Cleveland Clinic Foundation Department of Nutrition Services
Pat Ellis, MS, RD Senay Publishing, Inc.
PO Box 397, Chesterland, OH 44026
Creative Cooking For Renal Diabetic Diets
by The Cleveland Clinic Foundation Department of Nutrition Services
Pat Ellis, MS, RD Senay Publishing, Inc.
PO Box 397, Chesterland, OH 44026
Cooking The Renal Way
by the Council on Renal Nutrition of Oregon
Lois Edelstein, Rd, OCRN
Good Samaritan Hospital and Medical Center Dialysis Services
1015 NW 22nd Ave, Portland, OR 97210
Dietary Managment of Renal Disease
by Jacquelyn S. Cost, RD
Charles B. Slack, Inc.
6900 Grove Road, Thorofare, NJ 08086
The Good Eating Series: 101 Low Sodium Recipes
by Corinine T. Netzer
Bantam Doubleday Publishing Inc.
666 5th Ave, New York, NY 10103
Gourmet Renal Nutrition Cookbook
by Meredith C. Greene, RD
Lenox Hill Hospital Dialysis Unit
100 E 77th St. New York, NY 10021
Kidney Patients Wellness Diet
by Emma Keenan
Grunwald and Radcliff Publishers
5044 Admiral Wright Road, Suite 344
Virginia, Beach, VA 23462
Living Well On Dialysis. A Cookbook For Patients and Their Families
by the National Kidney Foundation
Council of Renal Nutrition Global Medical Communications, Inc.
41 Madison Ave, New York, NY 10010
The Mayo Clinic Renal Diet Cookbook
by Joyce Daly Margie, MS
Western Publishing Company, Inc.
850 Third Ave., New York, NY 10022
The Renal Family Cookbook Unique Collection of Specialized Low Salt Recipes
by the American Kidney Fund
Association for Nephrology Dietitians of Canada
Renal Family, Inc.
Suite 302, Downsview, Ontario Canada M3H5W1
The Renal Gourmet. A Cookbook by a Kidney Patient
by Mardy Peters
Ememar, Inc.
1545 Lee St., Suite 6100
Des Plaines, IL 60018
Bowes and Church's Food Values of Portions Commonly Used: Spiral
Jean A. T. Pennington, Anna De Planter Bowes, Helen Nichols Church
In-Stock: Ships within 24 hours
Format: Paperback,17th ed.,481pp.
ISBN: 0397554354
Publisher: Lippincott-Raven Publishers
Pub. Date: January 1998
A Taste of Asia: Asian Recipes for a Renal Diet
by Elizabeth D. Gubisch
91 pages
Published by and available from:
National Kidney Foundation. Northern California
553 Pilgrim Drive, Suite C
Foster City, CA 94404
(650)349-5111
Donation: $5.00
Very traditional recipes tailored and tested for the renal diet. Written
under supervision of several Renal Dieticians. Examples include: Vegetable
Lumpia, Roast Chicken with Lemongrass,
and Apple Turon for dessert.
Chinese Renal Kitchen - Cookbook for People with a Special Diet for Kidneys
by B.C. Chinese Nutritional Consultants
Sponsored by Community Care Foundations in partnership
with St. Paul's Hospital
Mail check ($25.00 us) payable to
"St. Paul's Hospital"
St. Paul's Hospital - Nutrition Services
c/o Sandy Porter
1081 Burrard St.
Vancouver, B.C. V6Z 1Y6
Tel. 604-806 9011
Fax 604-806-8449
Renal Web Recipes
http://www.geocities.com/HotSprings/Oasis/5044/
Food Nutritional Values
http://www.nal.usda.gov/fnic/foodcomp
This site allows the user to type in various foods (including brand name
items) and request values for a range of nutritional data including
phosphorus, polyunsaturated fats, etc.
http://www.ag.uiuc.edu/~food-lab/nat/
NAKPHOS Counter
http://members.aol.com/nutrisoft/ngkdn46.html
NutriGenie - Kidney Disease Nutrition
Searchable database bookstore by author and/or title
http://www.oznet.ksu.edu/ext_f&n/
Extension Foods and Nutrition
Searchable nurtitional data base at the US Department of Agriculture.
http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl
Featuring a renal recipe of the week:
http://www.CulinaryKidneyCooks.com
Here's the Website of a free program Windows users can download.
"Nutrition Facts is free Windows 95/98 or NT software containing detailed
nutritional information on over 6200 foods. The food list is also fully
searchable." It includes phosphorus and potassium in its listings!
FOODS HIGH IN SODIUM:
MEAT AND MEAT SUBSTITUTES:
Anchovies; beef jerky; canned meat or poultry; corned beef; cured or
smoked meat; ham; hot dogs; luncheon meats; pickled herring; pizza;
salt pork; sardines; sausage; cheese spreads; processed cheese; frozen,
canned or packaged entrees.
STARCHES:
Packaged mixes for rice, potatoes, pasta, or bread stuffing; canned or
dry soup mixes; pork & beans; salted
snack crackers, chips, or pretzels.
MILK / MILK PRODUCTS:
Buttermilk; instant cocoa mix; instant
pudding mix.
VEGETABLES:
Canned veggies with salt; pickles; sauerkraut; tomato juice with salt;
vegetable juice with salt.
FATS:
Bacon; olives; salted nuts; salted
spreads and dips.
MISCELLANEOUS:
Soup, broth or bouillon containing salt; meat sauces; onion salt, garlic
salt, MSG, or spice mixes containing
salt.
FOODS HIGH IN PHOSPHORUS:
ALL DAIRY PRODUCTS:
Milk; cheese; cream; ice cream; ice milk; pudding; custrad; cream pies;
milkshakes; yogurt.
MEAT / MEAT SUBSTITUTES:
Flounder; beef liver; oysters; salmon;
sardines; scallops.
WHOLE GRAINS:
Barley; bran; oatmeal; whole wheat bread; pumpernickel / dark rye bread;
whole wheat, bran or granola cereals.
LEGUMES:
Baked beans; black-eyed peas; kidney beans; lentils; nuts; lima beans; navy
beans; soy beans; split peas; peanut
butter.
VEGETABLES:
Artichoke hearts; asparagus; corn;
mushrooms; mustard greens, peas.
FOODS HIGH IN POTASSIUM:
All milk and dairy products
FRUITS:
Apricots; banana; dried fruits; kiwi; melons (all kinds); nectarine; orange;
orange juice; fresh peaches; freash
pears; prune juice; strawberries.
VEGETABLES:
Asparagus; fresh beets; brussel sprouts; dark leafy greens; kohlrabi;
mushrooms; potatoes; pumpkin; rhubarb; spaghetti sauce; spinach; winter
squash; tomatoes; tomato juice;
vegetable juice.
Salt Substitutes
FOODS LOW IN POTASSIUM:
Breads and cereals
Fats
FRUITS:
Apple; applesauce; blueberries; boysenberries; cranberries; cranberry juice;
fruit cocktail; fruit drinks (Hi C, Kool-Aid); grapes; peach nectar; pear
nectar; canned pears; pineapple; canned
plums; raspberries.
VEGETABLES:
Bean sprouts; green or wax beans; raw cabbage; cooked carrots; green pepper;
lettuce; radishes.
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Stay near to the cutting edge of new developments in renal technology by
reading of ESRD issues important to you.
MAGAZINES
The aakpRENALIFE magazine is a quarterly publication by the American
Association of Kidney Patients (AAKP). Excerpts are available at:
(800)749-2257 http://www.aakp.org/ or by subscribing to the "aakp
RenalFlash" electronic newsletter, delivered the 2nd Wednesday of each
month.
Dialysis and Transplantation
(producers of "The List") http://www.eneph.com
Order your own copy of the travel guide
"The List" by calling (800)442-5667
For Patients Only (FPO)
Office in NYC: Ashley Publishing
(212)376-7722
Nephrology News & Issues (NN&I)
(480)443-4635 http://www.medicalsnews.com/nephrology
or email requests to: <mark@nephnews.com>
The Merck Manual is now online.
http://merck.com/pubs/mmanual_home/
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DIALYSIS MODALITIES/TREATMENT OPTIONS
1 ounce of drinking fluid equals approx 29.6 ml or cc
32 oz of drinking fluid = about 947 ml/cc
1 kilo = 1,000 ml/cc
1 liter = 1 kilo = 2.2 lbs
There are currently 4 different treatment *options* for managing ESRD. It
is likely over a lifetime of ESRD, an individual may try the benefits each
has to offer.
Each treatment has many decisions. As you are a part of the overall health
care team of doctors, nurses, social workers, etc., it is important to
consider many factors determining the
best treatment plan.
These factors include, but are not
limited to:
overall medical condition
lifestyle
distance from a dialysis center
home setting
family helpers on hand
friends and family support
emotional concerns
physical abilities
Read an online treatment booklet by Life Options called:
New Life, New Hope http://www.lifeoptions.org/nlnh/lorac.html
1) Hemodialysis
Blood is pumped from the body through sterile tubing lines connected
to a dialysis machine which contains an artificial kidney (a filter
called a dialyzer). The dialyzer cleanses the blood (removing toxins)
and returns it back to the patient. The average prescribed treatment
is three times weekly lasting from 2 to
4 hours each time.
These are from the book of "Handbook of Kidney Transplantation"
by G.M.Danovitch M.D. 1992.
Advantages 1) Short treatment time
2) Highly efficient for small solute removal
3) Socialization occurs in the dialysis
center
Disadvantages 1) Need for heparin
2) Need for vascular access.
3) Hypotension wth fluid removal.
4) Poor blood pressure control.
5) Need to follow diet and treatment
schedule.
There are currently two options for how hemodialysis is delivered.
a. in-center
clinic based, operated under guidance of trained
nurses and technicians on-hand who provide the actual
dialysis treatment.
b. home
patient and trained helper perform treatments in a
home setting void of nurses or technicians, although
assistance is always available as close as a phone
call. Training usually takes 6 weeks and involves
some investigation of the home (water, electricity,
etc.).
c. Nocturnal Dialysis
Lynchburg dialysis where you can see for yourself
the kind of return to a normal quality of life that these
patients experience by reading testimonial from them
and viewing graphs of their results. You can also see
the letter that Lynchburg sent to HCFA explaining the
need for a reimbursement change. The
link is: http://www.lynchburgnephrology.com/moreinfo/nhhd.php3.
The remaining hurdle is getting HCFA to agree to pay for a fourth treatment per
week as this will allow the clinics to make a profit even if they dialyze their patients
7 times per week. Nothing sways HCFA more quickly and more emphatically
than input and militancy from patients. Anyone interested in influencing their
government to pay for giving patients more dialytic options should e-mail their
comments to: Jacqueline Polder <jpolder@hcfa.gov>
I strongly urge everyone everyone reading this FAQ to take the few minutes and
send this lady a quick memo. She's been to Northwest Kidney Center to see the
patients doing daily dialysis, is favorably disposed toward the modality and
is primed for such an e-mail assault.
Checklist for performing hemodialysis:
Before Cannulation
1. Correct dialyzer (if your clinic reuses filters).
2. Tube set is installed and routed correctly.
3. Arteriole and venous pressure filters attached tightly.
4. Line connections between arteriole and venous traps and pressure
inlets on machine tight.
5. Clamps unclamped on lines between air traps and pressure inlets.
6. Auxiliary lines on air traps clamped.
7. Line between saline bag and tubeset clamped.
8. Retainers tightened where tubeset goes around blood pump.
9. Make sure formaldehyde check test is clear.
10. Bicarb container full.
11. Correct acid bath, and full if container is used.
12. Machine set for correct acid bath (if applicable).
13. Dialysate pump set to correct speed.
14. Conductivity reads between 13.5 and 14.2 (or so depending on personal
preference).
15. Correct temperature, usually 37 degrees centigrade.
16. Correct fluid removal goal is set.
17. Set sodium modeling if needed
18. Set UF fluid removal modeling if needed.
19. Make sure correct run time is entered
20. Alarm levels of BP monitor set correctly and set to check BP
automatically at intervals if needed.
21. Make sure the needles are the correct gauge.
22. Heparin syringes for initial push and for heparin pump contain correct
amounts.
23. Heparin syringe correctly mounted in pump, line unclamped and pump set
and switched on.
24. Emergency call line within reach of patient while in chair.
25. Clamp and cut emergency kit is present.
26. Test for residual disinfection
After the Machine is Running
1. Correct venous and arteriole air trap levels.
2. Correct. blood pump speed.
During run
1. Check at intervals to ensure that fluid is being removed on schedule.
2. At one hour to end (or whatever is prescribed) turn off heparin.
(Some machines do this automatically). Clamp heparin line.
3. Near or around end of run, ensure IV
meds are given (EPO, Calcijex, etc.).
Before takeoff
1. Make sure there is enough saline in the bag.
2. Air trap beneath saline bag has saline in it before bag squeezed by
tech.
For information on a new (not yet FDA approved) technolgoy for performing
daily dialysis - Personal Hemodialysis
Daily System http://www.aksys.com
URR (Urea Reduction Ratio) and Kt/V Dose
http://www.niddk.nih.gov/health/kidney/summary/hemodose/index.htm
.
2) Peritoneal Dialysis (PD)
http://www.baxter.com/patients/kidney_disease/index.html
Peritoneal dialysis has the benefit of the blood being constantly
cleansed. The dialysate (glucose solution) is filled into the
abdominal area (called the peritoneal cavity) by gravity flow,
dwells for a time, and is then drained
in the same manner.
Advantages 1) Steady-state chemistries
2) Higher hematocrit
3) Better BP control
4) Dialysate source of nutrition
5) Intra peritoneal insulin
6) Self-care form of therapy
7) Highly efficient for large solute removal
8) Liberalization of strict diet
Disadvantages 1) Peritonitis
2) Obesity
3) Hypertriglyceridemia
4) Malnutrition
5) Hernia formation
6) Back pain.
PD Checklist:
1) Cover air ducts and be prepared to close door
2) Assemble your supplies
3) Wipe your table, machine, and supplies (clips, bottles, etc) with
Lysol (Do NOT wipe solution bag.)
4) Make sure your clothes are clean
5) Put a mask on your face (to avoid breathing on sterile gloves)
6) Then wash your hands and arms with antibacterial soap in the kitchen
(Do NOT use bathroom basin)
7) Then use clean paper towel or elbow to turn off faucet and use
another clean paper towel for drying
8) Use paper towel to turn door knob when closing door
9) Finally put on sterile latex surgical
gloves
a. CAPD Continuous Abulatory Peritoneal Dialysis
This process requires no machine and usually repeats
4 times daily to receive adequate dialysis (each
patient will be tested to determine the best
prescription for CAPD treatment). The patient
manually performs the exchanges of PD solution.
b. CCPD Continuous Cycling Peritoneal Dialysis
CCPD uses a machine (called a cycler) to perform the
filling and draining of the dialysate automatically,
usually while the individual is sleeping. This
treatment is best for individuals who do not want to
perform exchanges during the day.
c. APD Automated Peritoneal Dialysis
APD is performed during the night time and permits
the individual freedom from dialysate solution in the
peritoneum during the waking hours (daytime). PET
(Peritoneum Equilibration Test) results will be
reviewed to determine if this treatment will work
best for you. Baxter HomeChoice: (800)22-9837
d. IPD Intermittent Peritoneal Dialysis
IPD treatment is usually best performed in a hospital
environment. It uses the same type of machine as CCPD
and can be done at home. This treatment takes longer
than CCPD and has a definite start and end to
exchange cycles.
3) Kidney Transplant
A transplanted kidney is able to perform all the essential tasks lost
from the failure of original (called native) kidneys. One kidney is
able to perform all the necessary functions of the body efficiently.
a. Cadaveric kidney donor
A deceased brain-dead donor.
b. Living Related kidney donor
A family member, brother, sister, mother or father,
cousin, spouse, etc., who wants to donate a kidney.
c. Living Unrelated kidney donor
A friend, church member or *possibly* unknown
acquaintance who wants to donate a kidney.
United Network for Organ Sharing
(Transplantation Information)
Take a "real" kidney transplant journey to learn of the process.
Produced in part by the Division of Transplantation (DOT).
http://www.transweb.org/journey/guidebook/gb_1.html
4) No Treatment
None of the various *chronic* kidney disease treatment options are
selected and ultimately, results in ESRD death. End-stage renal
disease will *not* fix itself and mandates some form of dialysis
treatment or kidney transplant to continue life.
There is no one best treatment for everyone. It is a highly personal
decision. Each of us must look at the facts and make up our own mind with
consideration for our individual circumstances and values. Here are some
citations which may help:
Avram MM, Sreedhara R, Mittman N. Long-Term Survival in End-Stage Renal
Disease. Dialysis & Transplantation
27: 11-21, 1998.
Charra B, Port FK, Berger EE, Lowrie EG, Parfrey PS, Foley RN, Posen GA,
Collins AJ. How can the mortality rate of chronic dialysis patients be
reduced? Sem Dial 6: 91-104, 1993.
Delano B. Home hemodialysis offers excellent survival. Adv Renal Replace
Ther 3:106-111, 1996.
Delano BG, Friedman EA. Correlates of decade-long technique survival on
home hemodialysis. Asaio Trans 36:
337-339,1990.
Foley RN, Parfrey PS, Harnett JD, Kent GM, ODea R, Murray DC, Barre PE.
Mode of dialysis therapy and mortality in end-stage renal disease.
J Am Soc Nephrol 9: 267-76, 1998.
Kawaguchi Y, Hasegawa T, Nakayama M, Kubo H, Shigematu T.
Issues affecting the longevity of the continuous peritoneal dialysis
therapy. Kidney Int. Suppl 62: 105-7,
1997.
Mailloux LU, Kapikian N, Napolitano B, Mossey RT, Bellucci AG, Wilkes BM,
Verance MA, Miller IJ. Home Hemodialysis: Patient Outcomes During a 24-Year
Period of Time From 1970 Through 1993.
Adv Renal Replace Ther 3:147-153, 1996.
Oberley ET, Schattell DR. Home hemodialysis: Survival, quality of life,
and Rehabilitation. Adv Renal Replace
Ther 3:147-153, 1996.
Oberley ET, Schattell DR. Home hemodialysis and patient outcomes.
Dial Transpl 24: 551-555, 1995.
Turka LA. What's new in transplant immunology: problems and prospects.
Ann Intern Med 128: 946-8, 1998.
Woodrow G, Turney JH, Brownjohn AM. Technique failure in peritoneal
dialysis and its impact on patient
survival. Perit Dial Int 17: 360-4, 1997
---------- ---------- ----------
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Although Medicare eventually becomes your primary insurance carrier for
dialysis treatment (even if you have a private policy), it is helpful to
know what exists and how it might affect
your situation.
INSURANCE
<a href="http://www.hsc.missouri.edu/~mokp/docs/kidney.htm">
Dialysis and Kidney Medicare Supplement</a> for a description of basic ESRD
Medicare insurance benefits and entitlement. One should read this document
to fully understand benefits provided by Medicare for ESRD. This is the
online version of the hard-copy book.
For individuals needing Medicare supplemental insurance, an application
is available by calling AARP (American Association of Retired Persons) or
writing with questions directed directly
to:
AARP Healthcare Alternatives
P.O. Box 7000
Allentown Pa 18175-0400
Medical Billing
This is is the name and address of the company tracking my medical bills.
There are other companies performing this type of work, but I've found these
folks to be highly capable, very friendly, and the most reasonably priced.
They also were written up in Business
Week.
Henry Matoren, President
Claims Security of America
3926 San Jose Park Drive
Jacksonville, FL 32217
(800)400-4066
Beneficiary Right to Itemized Statement for Medicare Items and Services
News Brief: March 1999
The Balanced Budget Act of 1997 gives beneficiaries the right to submit a
written request for an itemized statement from their provider/supplier for
any Medicare item or service. The law requires that providers/suppliers
furnish the itemized statement within 30 days of the request, or they may
be subject to a civil monetary penalty of $100 for each unfulfilled
request. If an itemized statement is received, the beneficiary may request
the Medicare contractor to review specific issues (i.e., services not
provided, billing irregularities, and appropriate measures to recover any
amount inappropriately paid). For more info, go to:
<a href="http://www.xact.org/statement-news.html">Statement-News.html</a>
http:www.eterm.com
Providing a 500K policy with CNA if one
is an ESRD patient over one year post kidney transplant.
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Locating organizations endeavoring to meet the educational requirements of
a specific chronic illness concern can be very helpful in assisting one to
develop a better understanding of their
kidney health condition.
ORGANIZATIONS
American Association of Kidney Patients (AAKP)
A membership based patient advocacy and support group.
AAKP National
100 South Ashley Drive, Suite 280
Tampa, Florida 33602 USA
Toll-free (800)749-2257 in the USA
email: <AAKPnat@aol.com> or http://www.aakp.org
American Kidney Fund (AKF)
6110 Executive Boulevard, Suite 1010
Rockville, Maryland 20852
(800) 638-8299
(301) 881-3052
FAX (301) 881-0898
AKF Patient Aid Programs
The INDIVIDUAL GRANTS PROGRAM provides financial assistance to eligible
ESRD patients who are referred by their physicians and social workers.
Grants are provided for medications, transportation, donor assistance,
special dietary needs, and other treatment-specific services and
expenses. Social workers may re-apply on behalf of individual patients
throughout the year.
National Association of Nephrology Technicians (NANT)
The NANT mission is "to promote the highest quality of care for ESRD
patients through education and professionalism." Learning that there is a
professional organization just for technicians may help to increase their
commitment to their jobs--and to you, the patient.
(987)586-3705 or NANT website http://www.nephroworld.com
National Kidney Foundation (NKF)
Read the DOQI (Dialysis Outcomes Quality Initiatives) Guidelines
(800)922-6010
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Medication sustains life by keeping you healthy. Knowing the reasons why
medications have been prescribed are important to develop an effective
understanding for their proper use and what it means especially for you.
Of importance too, is being able to
financially afford them.
PHARMACY ASSISTANCE PROGRAMS
Need help with Medications?
This company "processes" forms to apply for *FREE* medications.
http://www.themedicineprogram.com/info.html
Need help with pharmaceuticals? There is a list of pharmaceutical patient
indigent programs which can be accessed at the following Senate website:
http://www.senate.gov/%7Eaging/drgcom.htm. You can also call for a copy of
this handy booklet at (800)762-4636 or (202)835-3460. The booklet provides
information on what is needed to make an
application for assistance.
U.S.MEDICATION ACCESS PROGRAMS
http://www.goodnet.com/~ee72478/enable/medication.htm
Amgen Safety Net
(800)77-AMGEN (main switchboard) if you are encountering trouble in securing
the financial means for receiving EPO.
FREE AND LOW COST PRESCRIPTION DRUGS
"FREE & LOWCOST PRESCRIPTION DRUGS"
The Cost Containment Research Institute
Capital Hill Office
611 Pennsylvania Ave. SE, Suite 1010-C
Washington, DC 20003-4303
(202)637-0038
Immunosuppressive Drug Coverage Extension Act
WOW!! Find all kinds of help in locating drug assistance programs here.
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No reason to wonder what the medications you have been prescribed are
intended to do. Read about specific
actions of each drug.
PHYSICIANS DESK REFERENCE
Electronic PDR (Physicians Desk Reference)
Learn prescription drug effects
http://www.ncbi.nlm.nih.gov/PubMed/
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Technology has rendered many enlightening products to effectively manage
certain conditions specific to ESRD. I expect this area to grow as more
individuals share in their findings and
offer it here.
PRODUCTS
CARNITOR
For individuals who have a nephrologist attempting to acquire either
Medicare or Private insurance authorization or reimbursement concerning
L-carnitine (prescribed as Carnitor), you may find the following
information useful.
Sigma-Tau has a specialist within the company who seems to be able to
resolve "insurance problems dealing with suspected lack of coverage"
issues for Carnitor if the Doctor/Patient will contact him directly and
provide some details.
H. Tom McCurdy, Ph.D.
Director, Medical Information
6401 Rambridge Drive
Oklahoma City, Oklahoma 73152
Tel: 405/721-5189
FAX: 405/721-4291
Email: <HTMcCurdy@email.msn.com>
Sigma-Tau and Carnitor
EPOGEN
For those individuals interested in reading some data about EPO, the
National Kidney Foundation (NKF) has a brochure packet containing tow
booklets titled * "Administering EPO, A Guide for Kidney Patients." Although
written to assist the self-administering of EPO by injection, one of the
booklets provides some background on EPO and its importance to ESRD
individuals. NKF can be reached at (800)
622-9010.
-----
Study Shows I.V. Iron More Effective than Oral
A recent study published in the American Journal of Kidney Diseases (7/95)
suggests that intravenous ad- ministration of iron supplements, compared
to oral administration, results in improved erythropoiesis and a rise in
iron stores. The study, conducted by Steven Fishbane, MD; Gill L, Frei,
MD; and John Maesaka, MD; examined 52 hemodialysis patients at the
Winthrop- University Hospital Dialysis Center in Mineola, NY. Twenty
subjects were given intravenous iron dextran, while 32 received oral iron
therapy. Subjects had all been on dialysis for at least three months,
were receiving recombinant human erythropoietin (rHuEPO) and oral iron
therapy, and were considered to be iron replete at the outset of the study
(having a baseline serum ferritin greater than 100 ng/mL and transferrin
saturation, or TSAT, greater than 15%).
After one month, mean hematocrits and mean serum ferritin were significantly
higher in the intravenous iron group. RHuEPO doses, meanwhile, were 46%
lower in the intravenous group than in the oral group. The only adverse reaction
resulting from the intravenous therapy
was diarrhea.
Although the subjects fit the criteria for being iron replete at the
outset of the study, they showed improved erythro- poiesis with
intravenous iron therapy. The researchers propose that currently accepted
"normal" levels for ferritin and TSAT should be increased to iden- tify
patients with suboptimal iron stores. Their observations suggest that a
TSAT of 25% and a serum ferritin of 200 ng/ mL are more appropriate
measures of normalcy. Under these guidelines, the researchers say, "most
hemodialysis patients appear to have inadequate iron stores for optimal
erythropoiesis."
Reference "Nephrology News and Issues", Vol 9 No. 10. October 1995.
Clinical News, pg. 34.
My husband has been on CCPD for over two years, except we cannot bring
his iron levels up. Does anyone have any
suggestions? He is allergic to IV Iron.
Try ferrous fumarate in the form chromagen or nephroFe from R&D labs.
It is more tolerable than ferrous sulfate and has more readily available iron
than other forms.
-----
ITCHING AND DRY SKIN
Many people have tried Sarna lotion, Nephro-derm, and Aveenobath
(oatmeal baths). UV light (availible at dematologists) has also been
somewhat helpfull. The skin of dailysis patients contains more mast cells
(biopsy proven) than the skin of normal people. Mast cells contain the
molecule histamine causing intense itching. Antihistamines can block the
effect of histamine.
There is a cream called Nephroderm which works wonders at stopping the
itching -- very few pharmacy's carry it, but it can be ordered -- ice water
and ice cubes also help stop the itching working as a sort of temporary
anesthetic -- needless to say, the phosphorus (PO4) must be brought down --
there is the new Renagel and even alucaps -- along with the various calcium
based binders such as Tums, Calicum
Carbonate, and Phos-Lo.
HOME REMEDY SALVE FOR RELIEVING ITCHY
SKIN
2 oz. yarrow (flower and/or leaves), chopped
2 oz. comfrey leaves, chopped
1 pt. vegetable oil
1 1/4 oz. beeswax
1000 i.u. Vitamin E (contents of 2 of
the 500 i.u. capsules)
Combine herbs and vegetable oil in a crockpot. Heat gently (do not boil) for
1 to 2 hours, stirring occasionally. Strain and discard herbs. Pour the
liquid back in the crock pot. Keeping it warm, add the beeswax and Vitamin E.
As it cools, it should be the consistency of peanut butter. If it is too
runny, warm it again adding a little more beeswax. This salve is good for
itchy skin, skin rashes, diaper rash,
burns or use as a healing ointment.
This is the recipe for the salve my husband uses. He tried every powder and
lotion we could find, even a prescription. It is the only thing that works
for him. I hope it helps any of you who are interested. This recipe makes quite
a lot, so you won't need to make it often. For a place to store the salve, use
an old 35mm film container.
-----------
PHOS-LO
Manufactured for Braintree Laboratories, Inc., Braintree, MA 02185
---------
PROTEIN SUPPLEMENT
If you need a protein supplement to help increase your intake, try Pro Cel.
This powder mixes easily with foods and drinks and does not change the taste
of anything. The company who sells it is called:
Global Unlimited
Rochester, NY
(800)638-2870
NutriSOY Nutritional Soy Protein Products
Call 1-800-TALK-SOY and ask for an information packet containing
several pamphlets on nutritional characteristics of soy and how to handle
and cook with various forms of soy.
http://www.supplementdirect.com
Whey Protein for Elevating Albumin
Levels
PSYLLIUM
(Constipation)
As contained in Metamucil. Works great for reducing constipation!
Approved by nephrologists for dialysis
patient usage.
RENAGEL
Info on Renagel for reducing high Phosphorus (PO4)
Insurance Problems?
Call the Renassist Hotline (800)847-0069 and GelTex will help you with
settling insurance coverage denials.
http://www.pslgroup.com/dg/2070a.htmRenaGel
NEW Phosphorus Binder Replacement
The easiest way I found to get the Renagel was to have it ordered through
the consultant pharmacist for the dialysis center. Every center must have
a consultant. He had it sent directly, along with the Zemplar, since most
patients who need one need the other to
prevent hypercalcemia.
I have been taking Renagel for about 5 weeks. Although I have not yet had
my calcium and phosphorus tested, I can tell you the symptoms of high Ca
and high phosphorus (PO4) have gone away. When my calcium levels are high,
I suffer severe agitation; I am unable to sleep and feel nervous. When my
phosphorus levels are high, I itch terribly. All of this has subsided. The
only side effect I have noticed was a bad taste in mouth. This has gotten
better, but not totally disappeared. I also like this product because I
don't seem to have to take as much as the Phos-lo. If I forget to take it
with a meal, I can take it as much as 1 1/2 hours after eating and it still
works.
ZEMPLAR
Info on Zemplar for reducing high PTH
http://www.abbottrenalcare.com/ZEMPLAR/protocol.htm
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Rehabilitation does not mean simply returning to work. It means gaining
a better understanding into how an individual can return to an active
lifestyle even with a medical condition. Small steps towards a newfound,
potentially exciting new life are a sign
of rehabilitation progress.
REHABILITATION
A Guide To Work, Insurance and Finance for the Dialysis Patient
http://www.lifeoptions.org/employ/
The Life Options Rehabilitation Program, sponsored by Amgen Inc. since
1993, is dedicated to helping people live long and live well on dialysis
-- what we call "rehabilitation". Having a chronic illness means having to
adjust to a lot of changes in your life. "Life Options" was chosen as a name
for the program to tell people on dialysis that, although life is *different*
than it was before kidney failure, it can still be good, and there are many
options for what to do and how to have a
good life in spite of the illness.
The program is steered by the Life Options Rehabilitation Advisory Council
(LORAC), a group of experts including patients, doctors, nurses,
dietitians, exercise specialists, social workers, administrators, and
researchers. Since 1993, the LORAC has helped Life Options staff to
develop educational materials for people on dialysis and renal
professionals. All materials are available for free through the Life
Options Rehabilitation Resource Center or the Life Options website
(http://www.lifeoptions.org). Some materials must be ordered by dialysis
facility staff, others can be ordered by
patients, too.
All of the Life Options materials developed for renal professionals (and
our earlier patient materials) are based on the five core principles of
renal rehabilitation, or "5 E's" -- Encouragement, Education, Exercise,
Employment, and Evaluation. Over time the meaning of each of the E's has
evolved a bit:
* Encouragement = taking an active role in your own care and medical
decision-making, and keeping a positive attitude.
* Education = learning as much as you can about kidney failure and how it
is treated
* Exercise = Physical activity, including stretching, strengthening (e.g.,
lifting small weights), and aerobic activity, like walking or riding a
bike. Gardening is great exercise! People with chronic illnesses become
weak and debilitated if they just sit around. Think of your body as a
rechargeable battery--exercise is what recharges it! (Talk to your doctor
before doing anything a lot more strenuous than you've been doing.)
* Employment = productive activity, including paid work, school,
volunteering, and community or church activities. In other words, staying
involved in life.
* Evaluation = keeping track of what works and what doesn't, and changing
what you do so as much of your life
works as possible.
More recently, in our newest "Keys to a Long Life" patient materials, we've
tried to make the patient rehabilitation messages even clearer and more
empowering to dialysis consumers. These messages are based on research we
did with a number of patients, who agreed that these were the keys to
living long and living well on dialysis:
* Keep a positive attitude - you don't have a choice about what happens to
you, but you *do* have a choice about how you deal with it
* Get answers - go out and find them, and don't stop until you're satisfied
* Take action - figure out what you need
to do to feel your best
The Life Options website has descriptions of all of our materials, and you
can order them on-line and have them
mailed to you. Come visit us!
http://www.pueblo.gsa.gov/crh/vocational.htm
Directory of all USA vocational
rehabilitation services listed by State.
The National ADA Resource Center for guidance is (800)949-4232 V/TTY and the
Equal Employment Opportunity Commission, which handles Title I (employment)
of the ADA is (800)669-4000
---------- ---------- ---------- ---------- ---------- ----------
SLEEP DISORDER
Any sleep disorder can effectively place an individual into a precarious
situation. Restful sleep helps one to maintain proper mental processes and
overall physical well-being. If sleeping becomes a problem, help is
available.
Sleep Disorder Information Resources
* The American Sleep Apnea Association: (202)293-3650
* The American Academy of Sleep Medicine: (507)287-6006
http://www.aasmnet.ortg/index.html
* National Sleep Foundation: (202)347-3471
http://www.sleepfoundation.org
* National Heart. Lung, and Blood Institute: (301)592-8573
http://www.nhlbi.nih..gov/nhlbi/sleep/sleep.htm
OnLine Resources
* A.W.A.K.E. New York
http://www.bway.net/~marlene/awake.html
* Sleep Home Pages: Brain Information Service (UCLA)
http://www.bisleep.medsch.ucla.edu/
* Bibliosleep
http://www.websciences.org/bibliosleep/
* NAPS: New Abstracts and Papers in Sleep
http://www.websciences.org/bibliosleep/naps/
* The Journal Sleep (Stanford University)
http://www.stanford.edu/dept/sleep/journal
* The Sleep Well (Stanford University)
http://www.stanford.edu/~dement/
* The Yale Center For Sleep Disorders
http://www.info.med.yale.edu/intmed/sleep
* National School of Sleep Medicine
* School of Sleep Medicine
------- ---------- ---------- ----------
---------- ----------
Dialysis does not mean travel and vacation are over. It simply means a
little extra pre-planning must go into achieving the overall success of
your trip and the wonderful adventures
it can provide.