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ADPLD - POLYCYSTIC LIVER DISEASE - PLD LIVER SYMPTOMS |
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ADPLD POLYCYSTIC LIVER DISEASE or ADPKD with PLD
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WHAT IS THE MOST COMMON SYMPTOM FROM PLD?
Pain is the most commonly reported symptom from polycystic liver disease.
Alberta Canada polycystic liver disease PLD
36.6% experienced pain
9.6% had difficulty breathing
9.6% restricted mobility with hepatomegaly 45%
62.3% female
37.7% male
71.7% had PKD
mean age at diagnosis 56.4 years
There are many causes for liver pain. Do not let anyone tell you this pain is
not real. We are a very stoic group of individuals and often wait until there
is a low level of chronic pain before seeking help. Once
the pain becomes chronic, relief may even require opiods, such as fentanyl patches,
vicodin to control the pain. This allows us to function on a daily basis. There
is also a procedure available called a Splanchnic
denervation of T10 -T12. This is done laparoscopically, performed
by a thoracic surgeon and available at centers throughout the world.
Splanchnic pain South Africa
Splanchnic pain UK To read more about symptoms from PLD click here.
WHAT ARE SYMPTOMS OF PLD?
The most common symptom from PLD is pain. Most
individuals do not experience any symptoms from their liver cysts. A number
of individuals have multiple liver cysts that cause symptoms. At
the age of twenty or so if individuals with cystic livers have one or
two liver cysts, more than likely they will not go on to develop the kind
of cystic livers that require medical intervention. Some symptoms may include:
back
pain
bleeding into a cysts
candidiasis or yeast
clots in blood vessels from pressure of cystic liver
collapse lung
craving for sweets
difficulty breathing when laying flat
discomfort and fullness
distortion of ribs
disturbed sleep
early satiety
emaciated
fatigue
fat loss
fluid in the lung
fractures of ribs
headache
hemorrhoids
itchy skin
liver cyst rupture
liver cyst infection
inability to fall asleep
massive belly from cystic liver
massive liver presses against veins and arteries
matted spider veins telangectasias that burn
muscle wasting
nausea
pain
poor appetite
rupture of a liver cysts presents like an acute abdomen
rarely bones are broken from the growth of liver cysts
really hungry but unable to eat more than a cupful with a feeling of fullness
and discomfort
reduced platelets that are of no significance
shortness of breath especially when walking
skinny upper body
sleeping flat on back difficult
swelling of legs, feet
swelling of the feet that makes walking painful
tiredness-from carrying around an extra 40 pounds of cystic organs
unable to walk very far
urinary stress incontinence
uterine prolapse
varicose veins
weight gain
PLD RESEARCH
ADPLD
Genetic Study If
you have only liver cysts without any kidney cysts, it is likely that you probably
have ADPLD, autosomal dominant polycystic liver disease. It can be very confusing.
If you need further clarification, send an email.
Lyn has established a PLD polycystic liver disease support list serve. None
of her family members have kidney cysts. For individuals without kidney cysts
and only liver cysts, there is an ongoing genetic study from the Mayo with Dr.
Peter Harris and Dr
Torres and through Yale with Dr.
S. Somlo who are all looking to do gene phenotyping of ADPLD.
This requires a donation of a test tube of your blood. It does not require travel.
They can mail the kit to you and you mail it back in a pre-paid envelope. Email
with any questions.
Octreotide Clinical Trial The first ever, a clinical trial to see if Sandostatin will diminish liver cysts. For more information click here or send an email.
Octreotide Clinical Trial in Italy. Guiseppe Remuzzi, Mario Negri Institute, Bergamo, Italy: Their study will look at the effect of long-acting somatostatin on disease progression in ADPKD.
Tatyana
Masyuk MD, Mayo Clinic, Rochester, MN: In this study, the treatment of PLD
Polycystic Liver Disease will be explored. Octreotide
article by Dr. Masyuk.
An animal model for ARPKD
Hepatic Artery and Portal Vein Reconstruction in the animal model abstract
Complete article
Biliary Dysgenesis PCK rat (ARPKD)abstract
Complete article
Development PCK rat (ARPKD) and liver PCK rat biliary dysgenesis abstract
Complete article
Human Liver Stem Cells: Recent Developments
Marie
Hogan MD, Mayo Clinic, Rochester, MN: The third project will research the evaluation
and treatment of chronic Pain in ADPKD. Dr. Hogan is currently heading up clinical
trials on Octreotide and chronic long term pain from
PKD.
PKHDL1, a homolog of the autosomal recessive polycystic kidney disease gene
The
gene mutated in autosomal recessive polycystic kidney disease encodes a large,
receptor-like protein
Vicente
Torres, MD,
Mayo Clinic, Rochester, MN. From him comes almost all the major research
on Polycystic Liver Disease. If there is a question should you need a liver
resection, a liver transplant, a TAE, or conservative medical treatment for
liver cysts, this is the physician to turn to. He has numerous published
articles on cystic organ disease. His most recent shows sirolimus also reduces
liver cysts.
POLYCYSTIC LIVER DISEASE ARTICLES click here
last updated Tuesday, April 29, 2008 3:50 PM