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ACE inhibitors
A type of blood pressure medicine which utilizes the renin-angiotensin blood
pressure regulating system of the body. People with Polycystic Kidney Disease
PKD have an alteration of this mechanism with an overproduction of renin which
causes blood pressure to rise. In some individuals ACE inhibitors may cause
a cough to develop.
acid chyme Is acid stomach contents of partially digested foods. This
is the trigger for secretin to be released which causes the epithelium lining
of liver cysts to fill with fluid and expand. This may be counteracted by taking
the medication prilosec often prescribed for reflux and heartburn both which
can be problems for individuals with liver cysts.
acute Acute often means urgent. An acute disease happens suddenly. It
is present right now. Acute is the opposite of chronic, or long standing.
acute renal failure A condition in which the kidneys suddenly stop working.
In some acute cases, kidneys can recover from an almost complete loss of functioning.
albuminuria Abnormal amounts of a protein (called albumin) in the urine.
Albuminuria may be one of the first signs that the kidneys are possibly starting
to decline.This is known as nephrotic syndrome.
allograft An organ or tissue transplanted between two human beings.
aldosterone Part of the sodium retention mechanism of the body which
causes individuals with Polycystic Kidney Disease to retain salt and water which
contributes to high blood pressure.
anemia A shortage of red blood cells. This results in extreme tiredness,
shortness of breath, a general feeling of illness. If left unchecked this can
eventually lead to LVH left ventricular hypertrophy.
angiotensin receptor site blocking agents Blood pressure regulating medication
which blocks the receptor site for angiotensin. Thought to also increase the
blood supply to the kidneys.
ADPKD Autosomal Dominant Polycystic Kidney Disease
ADPLD Autosomal
Dominant Polycystic Liver Disease
ARPKD Autosomal Recessive Polycystic Kidney Disease
alkaline ash foods Foods which cause an alkaline residue to be left behind
changing the urinary pH to 6.5-8.0. Almost all fruits and all vegetables
are alkaline ash foods.
acid ash foods Foods which cause an acid residue to be left behind which
changes the urinary pH to 5 or in the yellow range. Animal products, dairy,
cheese, eggs, milk, steak, poultry, hamburger, bread, sugars, alcohol, pork,
game, chicken, duck, nuts, seeds, beans, legumes, grains.
alkaline diet Eating foods which cause the urinary pH to become a pH
of 6.5-8.0 Eating lots of fruits and vegetables and fresh juices.
anions Negatively charged minerals such as Cl- chloride, Ph- phosphorus
Budd-Chiari
Often associated with ARPKD. An inherited disease of the liver cysts. Requires
special watchfulness to prevent infections.
angiotensin Part of the blood pressure regulating system within the body.
This goes awry with Polycystic Kidney Disease, causing elevations in blood pressure.
blood in the urine, microscopic This is tested through the use of a dipstix
placed in a urine sample. Microscopic blood in the urine is very common with
Polycystic Kidney Disease. Frank bleeding however is something which should
be carefully checked out. Another way to test for blood in the urine is to look
at under a microscope. The examiner may see red blood cells present.
blood pressure BP. This is a measurement of pressure exerted by
the blood as it is pumped through the body. This is measured in millimeters
of mercury pressure. For healthy kidneys keep blood pressure as near as possible
to 110/70 can add perhaps 15 years to the life of PKD kidneys.
CAT scan A
specialized imaging study which uses radiation to view the interior of the body.
The images are so clear, texture of tissue can almost be seen. The intravenous
dyes are thought to be used cautiously with individuals who have kidney disease.
cations Positively charged minerals such as Ca+ calcium;
Na+ sodium; K+ potassium. The body uses these to create alkalinity
within the body.
cyster An affectionate word coined on the web for a female with Polycystic
Kidney Disease. : )
chronic renal failure means that your kidneys are declining in their
functioning. The word chronic means that it is long standing condition. Kidney
functioning is generally low.
cystem A server for a computer which has Polycystic Kidney Disease PKD.
: )
dialysis A means
of providing for the functioning of the kidneys when the kidneys start to fail.
This can be in the form of hemodialysis through a shunt via the blood stream.
Another method uses the peritoneal cavity and is called peritoneal dialysis.
Sometimes dialysis can be continued for 30 years or more. Liver dialysis for
short term use has just received FDA approval.
diverticuli A symptom which is part of Polycystic Kidney Disease. Diverticuli
are little tiny outpouchings within the intestinal wall. Small indigestible
nuts and seeds (like strawberry, raspberry, sesame, tomato, eggplant) can become
trapped within the diverticuli and cause inflammation which closes the little
opening. This inflammation can develop into diverticulitis which is very painful
and may require antibiotics.
epo Short for
Epogen, one brand of synthetic erythropoietin alpha. Procrit is the other brand.
Natural erythropoietin is a hormone that is made by healthy kidneys which prevents
anemia by stimulating red blood cell production.
epogen Injections are given via an intramuscular injection, usually once
a week. Many people give themselves the shots. This is a man-made synthetic
version of human erythropoietin (EPO). It stimulates the bone marrow to produce
red blood cells. When giving yourself injections, change needles in between
drawing up the medicine and injecting the medicine. The solution needs to be
taken out of the refrigerator and allowed to come to room temperature before
injecting. This lessens the pain of the injection.
estrogen Hormones manufactured by the body. Synthetic estrogen is given
as a tablet.
estrogen-like-molecules Estrogen
and androgen are manufactured by the body. The residue from pesticides &
DDT takes on a similar molecular structure to hormones within the body. Due
to their similar molecule structure, the body sees these residual by products
of toxins as hormones. The hormone receptor cells contained within certain organs
can incorporate these estrogen like molecules into their cellular structure,
altering cell reproduction. Liver cysts are one example of cells which respond
unfavorably to exposure to toxins that have an estrogen like molecular shape.
Liver cysts seem to grow with exposure to estrogen and estrogen like molecules.
essential amino acids Those which must be eaten daily. For vegans, cabbage
juice is among the many vegetables which contains all essential amino acids.
A book by Mackenzie Walser MD Coping with Kidney Disease
suggests at some point after the development of nephrotic, one could take supplemental
essential amino acids and limit ingested protein to 22 grams/day thus arresting
the downward progression of kidney failure.
essential fatty acids EFA Those which must be eaten daily. For vegans,
hemp seed is one of the best food
sources for essential fatty acids. If you have liver cysts, an alternative source
might be walnuts or hemp seeds. A few have noticed flax gives them liver aches
and liver growth.
ESRD end stage renal disease. The point which transplant or dialysis decisions come
into play, when kidney functioning nears 20%.
fruititarian Generally
a raw food-y who likes mostly raw fruit.
flaxseed Contains
natural properties of fiber, lignans, and omega-3 fatty acids, alpha-linoleic
acid, and all the essential fatty acids.
Thought to be especially useful for lowering cholesterol. However many with
liver cysts have noticed liver cyst growth, pain and discomfort while taking
flaxseed. hemp seed is preferable.
HAN-sprd rat
An animal model used in research that has spontaneously developed Polycystic
Kidney Disease which reacts similar to the human model. Many of the animal experiments
on Polycystic Kidney Disease are done on these rats. A two-year rat life corresponds
to 75 years of human life. This was the Polycystic Kidney Disease animal model
used for medical research testing the alkaline diet by adding alkaline solutions
to their drinking water.
HRT Hormone replacement therapy
hemp seed Essential fatty acids and a good source of omega 3's with a correct ratio to omega 6's. I take a few drops drizzled over salad.
H2 inhibitors Cimentidine, zantac. Used for heartburn. Maybe useful in
preventing secretin from being excreted. Secretin triggers the epithelial lining
of liver cysts to produce fluid.
hormone receptors Present within liver cyst cells. An increase in circulating
hormones causes liver cysts to grow and expand.
HVOO Hepatic Venous Outlet Obstruction. A rare complication following
liver resection that can cause a back up of blood going through the liver. This
may lead to fluid in the lungs, fluid in the belly, nausea and vomiting.
hypertension This is another word for high blood pressure, often present
in individuals with polycystic kidneys.
immunosuppression
The artificial suppression of the immune response, usually through drugs, so
that the body will not reject a transplanted organ or tissue. Drugs commonly
used to suppress the immune system after transplant include prednisone, azathioprine
(Imuran),cyclosporin, and more. If you eat grapefruit or take St. John's Wort
inform your doctor when you are placed on immunosuppressive medications. Grapefruit
can cause one to lose a newly transplanted kidney or liver by interfering with
the metabolizing of the medications.
IVP Intravenous pyelorogram. Specialized x-ray where iodine dye is injected
into the vein and a series of x-rays are taken of the kidneys, ureters, and
sometimes bladder.
liver resection A surgical procedure done at specialized
treatment centers which relieves many of the symptoms of Polycystic
Liver Disease.
liver transplant An organ transplant sometimes done when a liver resection
cannot be performed for the relief of symptoms of Polycystic Liver Disease,
especially when the inferior vena cava and/or aorta are compressed or other
hepatic veins are in such a position that liver resection surgery is not possible.
A partial lobe of the liver is taken from a living organ donor for a liver transplant.
The first step in finding a match is having the same blood type as the organ
donor.
living related donor A family member who donates a kidney
or organ to another family member.
LVH Left Ventricular Hypertrophy. The leading cause of death for people
with Polycystic Kidney Disease.
marsuplization
Sometimes this is a microsurgical procedure done with a laparoscope for
the relief of pain. Other times it is done as an open surgical procedure in conjunction
with a liver resection. Both of these are performed at specialized centers.
mcyster [pronounced mister, Mr. ] An affectionate word coined
on the web for a male with Polycystic Kidney Disease :
)
MRI Magnetic Resonance Imaging uses a form of sound waves coupled with
magnets to view the interior of the body. An MRI is an amazing piece of equipment
which gives very detailed digitized photographic rendering of the internal organs
of the body.
Monsanto A chemical company who have genetically modified soy so it can
withstand tons of spraying of herbicide and still remain standing to then later
be consumed as food. They give the soy seed away to unsuspecting farmers who
are then obligated to buy the chemical weed killers to spray on their soy crops.
In New Zealand, soy is banned from all their infant food products.
native Native
organs are those organs we have at birth. The distinction is made between native
organs and transplanted organs. Sometimes the native organs remain in the body
even though a transplanted organ is surgically implanted.
nephron The smallest cell division of the kidney that is still kidney
tissue; the kidney cells. We are born with the full complement of nephrons,
somewhere around a million. Only 5% of these are said to be affected with cysts
from Polycystic Kidney Disease.
nephrologist A medical doctor who has spent several years training as
an internist then several more additional years in intensive study of the human
body and how it relates to the kidney, the nephron, the ureters, as well as
the physiology of the kidney organs. These doctors have studied additional years,
practiced in their specialty area for a number of years; they are also tested
and boarded by a specialty organization of nephrologists.
nephrotic syndrome The point
at which those with kidney disease begin spilling protein into the urine. It
is at this point that Dr. Walser's book Coping with
Kidney Disease seems to be helpful.
omega-3 essential
fatty acids EFA are found in hemp seeds.
In flaxseed, Omega 3 is in a ratio of about 4 times the omega 6 present. Ground
flaxseed provides a natural and concentrated level of omega-3 EFA's. With fish
oil there is the added chemical contamination that may be a risk with oily-fish
consumption. Oily fish products and flaxseeds may have a detrimental effect
on liver cysts by causing discomfort and pain for many of us. Omega-3 oils have
been thought to be of value for promoting health in other liver diseases. Unfortunately
with liver cysts, flaxseeds makes liver cysts grow. Other sources are walnuts,sesame,
and almonds.
omega-6 essential fatty acids are found in hemp seed, flaxseed, corn,
safflower, sunflower, canola, walnuts, sesame seeds, almonds, and soybean oils.
It is said that many in the USA have an unusually high concentration of omega-6
in their diet and this needs to be countered by increasing the amount of omega-3.
Flaxseed can provide this balance. Some have observed when they take flaxseed
or fish oils their cystic livers have pain. If you are among these individuals
other sources of essential fatty acids, omega-6 are: hemp seeds, walnuts, almonds
and sesame seeds.
organ donors Most states make it easy by placing on a driver's license
your wish to be organ donor. If this is not available in your area, there are
wallet size signed cards for one to carry. Transplanted organs are kidney, lung,
liver, pancreas,and heart—Skin and cornea are considered tissue. Lung and
liver can be transplanted using a portion of the organ taken from a donor. A
new type of donor is springing up, an altruistic donor, someone who has two
kidneys and wants to donate one to anyone who might need it. At Johns Hopkins
they have in place a donor exchange program. It has very good results. This
is associated with Dr. Montgomery.
OPC31260 A drug not yet released about to undergo clinical trials for
diminishing kidney cysts. It is currently ready to begin stage (2) II of FDA
approval.
OPC4106 A vasopressin 2 inhibitor designed specifically to help PKD'rs.
OPC31260 is the parent drug.
PKD Polycystic Kidney Disease.
phytic acid An organic acid which is bound to phosphorus. Naturally present
in the bran of grains, legumes, nuts and seeds. When grains have not been
soaked, fermented, sprouted or naturally leavened, the phytic acid combines
with iron, calcium, magnesium, copper and zinc in the intestines, blocking their
absorption. As little as seven hours of soaking in warm water is enough to naturalize
most of the phytic acid in grains. Soaking beans overnight, changing the water
several times and soaking some more before cooking will ensure that no intestinal
gas forms. I like to soak my beans in several changes of water over a
couple of days, until the beans begin to almost sprout. Interestingly enough,
cultures which eat a lot of beans have one of the highest rates of gallbladder
disease. Perhaps soaking the beans long enough to cause sprouting would help
deter the incidence of gallbladder disease?
PLD Polycystic Liver Disease. Two types of this disease. One associated
with PKD Polycystic Kidney Disease and second type where individuals have no
cysts on their kidneys, only on their livers. Both of these diseases are autosomal
dominant polycystic liver disease and autosomal dominant polycystic kidney disease.
Just recently the two two genes have been discovered through the combined work
of Dr. Torres and Dr. Somlo.
phytoestrogens Present in soy, black cohosh, and flaxseeds. Phytoestrogens
may have a similar effect to estrogens. This may cause growth of liver cysts
by triggering the hormone receptors within liver cyst cells. Almost all of us
with liver cysts have commented upon that soy and flaxseed causes liver cysts
to grow. This can also be due to the combined effect of two weak estrogen blockers
within the two products.
pH This is the hydrogen ion concentration as measured with
litmus paper. Urine is usually in the range of 5.-7. YELLOW 5
is acidic GREEN 6 neutral and BLUE 7 alkaline.
potassium citrate Available over the counter. Has been used for years
to prevent recurrence of certain types of kidney stones. Most recently in the
animal model it was shown that it is the alkalizing effects of potassium citrate
that accounted for the longevity of the Polycystic Kidney Disease PKD rat. It
was also the alkalinity which accounted for the surprising result that the rats
did not develop kidney failure nor did they develop the usual large multiple
cysts.
renal Relating
to the kidney. Diminished renal blood flow means a decrease in the blood which
flows to the kidneys.
renin Part of the blood pressure regulating system within the body. Renin
release causes blood pressure to elevate. This release is triggered by a decreased
blood supply to to the kidneys. Due to a low renal blood supply, renin is released
by the native remaining kidneys following a transplant. This may continue to
keep blood pressure elevated. Sometimes native kidneys are removed for persistent
uncontrollable hypertension.
sclerosing agent
Used when cysts are marsupalized. That is, the cyst is opened along the long
side and laid out flat. An agent such as an antibiotic is injected inside the
open cyst. This is much like picturing the cyst as an egg; and taking the egg,
slicing it along the long way; then tossing the inside bit of the egg so you
are left with a hollow shell cavity. The agent prevents the cyst from re-filling
with fluid by stripping out the epithelial layer of the cyst.
somatostatin An injectable intramuscular drug that lessens kidney cysts. Somatostatin clinical trials about to begin to determine if it diminishes liver cysts.
soy Observed by some individuals with PLD Polycystic Liver Disease, to cause an increase in symptoms from liver cysts. According to one article when combined with black cohosh actually increases hot flashes.
transplant An organ from another that is surgically placed inside the body and takes over the functioning of the native failing organ. This may be a kidney, liver, lung, heart, pancreas, or intestines. Centers are now performing simultaneous kidney and pancreas transplants or kidney and liver transplants. In the United States the largest number of transplants are transplanted kidneys. The total number of recipients on the waiting list for organ donors in the USA, is approximately 80,000. Most states make it convenient by checking a box on your driver's license that you wish to be an organ donor.
tolvaptan Still in clinical trials awaiting FDA approval. A vasopressin II (2) blocking agent which diminishes kidney cyst growth. Thought to be useful for both ADPKD and ARPKD.
uric acid Elevated
in people with gout and Polycystic Kidney Disease.
ultrasound Uses sound waves, much like porpoises use to communicate with
one another under water. Sound is bounced off solid objects, such as organs,
through a water medium, creating a picture.
vegan One who is a vegetarian who eats no animal products, no butter, no cream, no eggs, no milk no dairy, no meat and if they have PKD polycystic kidney disease they also avoid wheat, starfruit, strawberries, nightshade plants (potato, tomato, peppers, eggplant, tobacco) And with liver cystic disease PLD, they also avoid soy.
xenoestrogen Estrogen like compounds contained in residual pesticide sprays such as DDT, cow's milk, marbled meat. For a more detailed explanation go to liver xenoestrogens under topics.
last updated
Wed November 5, 2008 9:37 PM