Polycystic liver disease

[Walkes]

Hi

Anyone else on here with PLD?

[Beachgirl32]

I have polycystic kidney but I have lots of cyst in my liver now too. Do you also have pkd or just the liver? Are you having any problems?

[Mairead59]

I had a transplant two years ago. My PLD was diagnosed when I was in my late 40’s. Possibly aggravated by a late pregnancy - I was 40 when my daughter was born. I had my transplant at 61, by then my quality of life had deteriorated so much that I really couldn’t put it off any longer.

How are you coping with the symptoms?

[PostivelyJo in reply to Mairead59]

hi, I’ve got PKLD. I had transplant for kidney in 2019 but looks like liver needs to go. It’s so big and uncomfortable. I’m 60 this year. What are your thoughts. I’m getting in training for the op. My symptoms are few, bloating distended abdomen a lot of beaching and losing weight due to squashed up stomach.

Would love to know about your experience. I’m going through King’s in London

Jo

[Mairead59 in reply to PostivelyJo]

Hi Jo

I had a lot of work to do to make my self fit enough for the op so I’m glad to read you’re getting in training. I ended up so weak and under nourished due to my stomach being squashed that the dietician at my transplant unit (Edinburgh) had to work really hard with me to get some weight back on.

I did a fair bit of working with hand weights prior to the op and it really helped with being able to drag yourself up and around the bed.

In hindsight I know I put the op off for far too long. I had quite a few complications and ended up back in surgery three times in as many days which resulted in quite a long stay (over a month) in hospital. I was in a wheelchair prior to the op, I’m now able to get about as normal back to my gardening and volunteering. A bit slower than before I ended up in the wheelchair but that could possibly be down to getting older!

I hope you don’t have to wait too long for your call Jo, I was just over two years with one false alarm. xxx

[PostivelyJo]

Thank you for you reply . Congratulations on everything it’s a massive operation. You’ve gone through a lot by the sounds of it. You must be a strong person.

Do you have polycystic kidneys too? Mine are both huge and with the liver growing it’s quite a squeeze. Ive pushed to get this be looked at. I start the transplant listing process at the end of June ( been there done that so it isn’t stressful ) My theory being that it can only get bigger and that now must be better than later . Then of course there is the unknown wait period on the list.

what does it feel like not to have it ?

Do you agree with my thinking ? About removal now. Only thing is I’m symptom free ( at the moment) apart from stomach issues and inability to bend over etc

Jo