PKD to PLD

[MrsLL]

I was diagnosed with pkd about 19 yrs ago and it’s laid pretty dormant but about 6 moths ago I was diagnosed high BP so that triggered off a set of various tests - still working through kidney functionality details but bloods are ok and had a CT this week with contrast so will get more insight with results. With ultrasound though they say my liver now has cysts and is enlarged - apparently common with pkd - I can feel my W glared liver which is weird and abdominal seems to be more obvious since becoming aware of this - can an enlarged liver be reversed at all and what’s the best diet to keep liver and kidneys in check - any advice welcome as I think this is going to start to be a bigger part of my life than it’s been for the past 19 years now!

[MillBern]

This all sounds familiar! I was diagnosed with PKD and PLD about 5 years ago following a CT scan for abdominal pain. It showed my liver to be enlarged and full of cysts with very little normal liver tissue. Despite this my liver function is normal and my kidney function is stable. However my abdomen is large and I look pregnant which at 55 years old is not a good look! I have been told that surgery to reduce the liver size would only be done as a last resort so as my issues are cosmetic it is not an option. I do feel uncomfortable at times and have trouble bending over (to wash my hair etc) but my consultant has told me to live my life as best I can and not to worry too much about it. I feel fortunate that I generally feel ok so I try to stay positive and not let PKD define me!

[PaigeyPaigeForLife in reply to MillBern]

It sounds familiar to me as well, i was diagnosed with PKD in 1993 i will be 55 this year. I can relate to the uncomfortable feeling of the enlarged kidneys i have the same problem. This year has been the best I've had a in many many years, like you i too have to live with my large tummy that took some getting used to. I am also set to start taking the drug Tolvaptan, research and talk to your Nephrologist about this drug.

[PaigeyPaigeForLife]

Sorry to hear you have this disease, sadly its what we now have to live with. I also have PKD and struggled for years to come to terms with it, 2017 brought me some hope and this year has been the best in a long time for me. When you have pain free days enjoy them to the fullest. Research as much as you can, find a caring Nephrologist, also check out Davita.com

[atropa]

Have you seen your hepatologist yet? That should be your first port of call. There are treatment options, but in the UK they are not usually available on the NHS unless symptoms are very severe or liver function is affected. Basically there is aspiration, fenestration, resection and the drug ocreotide (not available on the NHS as far as I know). I'm not aware of any dietary measures that affect liver cysts, but keeping oestrogens low or balanced is a good idea as oestrogen stimulates cyst growth.

[123432]

Like others your story sounds familiar. I was diagnosed 12 years ago was ok until this year, I'm 45 now. I have cyst on kidney and a very large liver cyst 17cm which last year they attempted fenestration by laparoscopy but was unable to reach out as it was under the liver, I am going back again to discuss other options (whatever that may be??) I too look pregnant even in baggy clothes which for me is one if the worse things about this at the moment as I'm fed up having to explain myself and my condition. I feel like the consultants don't really understand what it is like to live with this condition so belittle any symptoms and basically say nothing they can do.

[123432]

Update. I have reduced my meat intake only it it on rare occasions now and I feel much better for it less bloated and liver pain seems to have gone. Not sure if it’s the change of diet that’s made the improvement but it’s the only change I have made.

[PaigeyPaigeForLife]

I suffer with depression and anxiety as a result of these enlarged kidneys and PKD at 55 its a struggle add to that raising a teenager, I am presently trying to do something to help change the way I feel. I am trying to avoid taking meds as they only leave me feeling sluggish. I really hope they find a cure this disease sucks.