Hepatomegaly --> why no info about PLD?

Posted , 2 users are following.

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.

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3 Replies

  • Posted

    Hi, thanks for your posting. Yes I agree with your comments regarding too little information on PLD. I too have PKD (with secondary hypertension) & PLD and find that there is much information about PKD but not very much about PLD. From my research on the internet (because there seems to be no other way of finding out about this disease) I have come to realise that it is because PLD is not seen as being life threatening. I find this rather frustrating because it is uncomfortable and it does cause problems with other organs. I have also been prescribed Amlodipine 10mg and Ramipril 10mg, both state that you should be cautious when taking these if you have liver problems! I am also in the early stages (just at the beginning of Stage 2) of PKD and have had no support regarding how to prolong a quality of life for as long as possible. I have just done as much research as I can to work towards a healthy eating pattern which takes into account both the liver and the kidneys.
  • Posted

    I realise that you probably know the ins and outs of your condition (by now) but PLD (and it's relationship with PKD) is touched upon in the Patient UK leaflet Home > Professional Reference > Liver Abscesses and Cysts, you can find it by using the search box (top right), search for Liver Abscesses and Cysts and it'll be the first result...

    Take care smile

  • Posted

    Hi House

    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

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