Hepatomegaly --> why no info about PLD?
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i find this web page very helpful and thorough for many illnesses and symptoms, e.g. Portal Hypertension, Cirrhosis, Budd-Chiari-Syndrom, etc.
As an over 60 yr. patient with PKD and Polycystic Liver Disease (PLD), I am naturally interested in the co-morbidities and symptom descriptions as thoroughly as you have done for many other diseases. In my own case the PKD is in a pre-dialysis stage which means careful monitoring of renal blood values and strict blood pressure control.
The accompanying PLD-Liver is huge and makes for a grossly distended abdomen and through its size has been symptomatic, which puts it in one of those very few percent who are not asymptomatic. The liver has often been aspirated over the last 29 years, de-roofing has been done laparascopically about 20 years ago, and almost 4 years ago exploratory liver surgery, radical fenestration (de-roofing) along with removal of a large section of the liver to reduce the compression of stomach, esophagus and intestines. The gall bladder was removed because histologically shown to have often been inflamed; a hernia was taken care of in the same OP. Portal hypertension and portal vein and hepatic thrombosis (partial) have necessitated permanent anticoagulant treatment.The American PKD web site and perhaps the British web site for PKD fortunately provide quite a bit of helpful information. But judging by your otherwise very thorough and helpful illness descriptions, I would have expected your site to also have included PKD/PLD as a congenital disease with a larger incidence than many more common illnesses.
0 likes, 3 replies
Lia12
Posted
Guest
Posted
Take care
Lia12
Posted
Yes thanks, for the reply, I accessed the link you emailed to me.
I have read much information and it all seems to say is that really there is nothing that can be done and to just learn to live with it, which is why it is so important to communicate with others who have a similar condition.
The focus is on the PKD but, from what I have read and heard about from other forums in relation to PKD, the blood and urine results don't really show anything until the individual has reached mid Stage 3 of the disease. I know the disease cannot be stopped but from the theories I have read there are thoughts that the progress of the disease can be slowed down through diet.
I have also read that the enlargement of the liver can be slowed down through diet too.
Anyway, thank you for your response.
Lia12