| Someone
we dearly love has Cystic Organ Disease with a cystic liver, cystic kidneys,
cystic pancreas or other involved organ cyst. This may be ourselves, our
child, a friend, a relative or all of them. We have been lucky enough
to meet on the world wide web allowing easy access to many more individuals
with Cystic Organ Disease (ADPKD, ARPKD, ADPLD). We are collectively from
32 countries: Australia, Benelux, Canada, China, Egypt, France, Germany,Greece,
Great Britain, India, Indonesia, Ireland, Israel, Italy, Japan, Malaysia,
Mexico,Netherlands, Persia, Peru, Philippines, Poland, Scotland, Spain,
South Africa, Sweden, Syria,Thailand, Turkey, Venezuela, United Kingdom,
United States - including 50 states from Alabama, Alaska, Arizona, California,
Connecticut, Colorado, District of Columbia, Florida, Georgia, Hawaii,
Idaho,Illinois, Indiana, Kansas, Kentucky, Maine, Maryland, Michigan,
Minnesota, Montana, Nevada, New Hampshire, New Jersey, New York, North
Carolina,Ohio, Oklahoma, Oregon,, Pennsylvania, Texas,Tennessee, Utah,Virginia,
Washington, and West Virginia to Wisconsin.
. . . . .and 6 continents: Africa,
Asia, Australia, Europe, North America, South
America. . . . and growing
including all original indigenous native peoples
of all these continents..
email us if your area is not listed.
Anytime of the
day or night, whenever we might have a burning question or in need of
support or if we would like an opinion, we can easily turn on the computer
and send a message. This is much more efficient then stuffing a note in
a little bottle, casting it into the ocean, hoping that someone will possibly
find our bottle. Here the ocean of the world wide web answers back—sometimes
sending wave after wave of e-mail messages. And on some occasions we communicate
a small message just to be reassured in our own knowledge that we are
not alone with this disease.
Cystic Organ Disease is a globally inherited disease. The manifestation
of the disease is very unique in each individuals. It varies even within
the same family. We are developing a combined effort to help ourselves
and each other—Here there are no national boundaries. We are one
world. We recognize in each other the humanness of us standing in a crowd
joining others with cystic organs. The will to communicate and help each
other is tremendously strong. Send an email for more information.
PKDiet was first begun to lessen pain from PKD and PLD. Through careful
observation, eliminating foods that increased symptoms such as bloating,
measurable girth, pain, and other symptoms, an evolutional process created
PKDiet. The fruition of this ongoing project has shaped an alkaline diet
geared toward a healthy liver and kidneys. PKDiet is alkaline, vegan,
avoids nitrogen rich proteins and, through its alkalinity, there is an
expected lowering of body acids: uric acid, oxalic acid, malic acid, lactic
acid; creating a friendlier environment for diminishing cyst growth.
In reading over gout diet recommendations, the foods are very similar.
Low oxalate diets are similar. Alkaline diets are similar. PKDiet has
been designed through our experiences with continued feedback from our
bodies, observing, by trial and error, which foods make us feel better
and which foods make us feel worse. We are in ready anticipation of a
future date when clinical trials will begin, coupling PKDiet with potassium
(or sodium) citrate to prove its effectiveness in diminishing cyst size,
cyst numbers, and increasing renal perfusion.
|
A protein
similar to polycystin was discovered in sea anemones.
We are sincere in our search
for the ways and means to improve, maintain our health, and diminish symptoms
from cystic organs. This site is for sharing ideas about our own individual
experiences with Polycystic Kidney Disease PKD, Polycystic Liver Disease
ADPLD, inherited Autosomal Dominant Polycystic Kidney Disease ADPKD, and
spontaneously occurring Autosomal Dominant Polycystic Kidney Disease ADPKD,
and Autosomal Recessive Polycystic Kidney Disease ARPKD as well as Caroli's
Disease and Medullary Sponge Kidney.
We are hopeful that by keeping track of our urinary
& saliva pH, foods, herbs, blood pressure, blood studies and imaging
studies we may find some indication of lifestyle changes, supplements,
herbs, and foods that may maintain healthy organs; delay kidney dialysis,
liver resection, kidney transplant, liver transplant perhaps indefinitely.
We are attempting to increase our chances that we will be among the lucky
40% of people with PKD Polycystic Kidney Disease or PLD Polycystic Liver
Disease who will never need dialysis or transplant. Those of us who have
already had a transplanted organ and/or are on dialysis wish to ensure
that we continue to live a healthy, joyful, and vibrant state throughout
our life. Those with ADPLD polycystic liver disease want to improve the
quality of our life and diminish the impact of cystic liver disease. Let
this web site be a song of courage for each of you to tell your story
and explain your personal experiences and results. All are welcome with the wish for fellow cyst-ers and m-cyst-ers – good health.
Welcome to PKDIET: an ongoing living experiment promoting health
for those who have Cystic Organ Diseases PKD, PLD, Caroli's, Medullary
Sponge Kidney.
|
Last
updated:
Wednesday April 23, 2008 9:51 PM
