Polycystic liver disease

[Ian57]

Well, appointment over and basically no need for admission, thank God. Have a collection of fluid and consultant has requested an urgent ct scan to establish the fluid collection. The possibilities of this is - a cyst has bled out, the portal vein could be compressed or just the complexity of his disease. This fluid collection is a complication which goes with liver disease

. My consultant is now going to discuss me with his counterpart , from king's college in London as he wants him to get me onto the list for transplant.

[ThreeSmiles]

Hi Ian

I have never heard of your condition, but having googled it - briefly I must say - that is probably because of its rarity. Apparently to require a Transplant is even more rare. 😕.

I do hope obviously that you get on that Transplant list, which, as a lot of us on here know, is an “achievement” in itself. I haven’t phrased that well, but I mean you don’t get on the list unless really needed - sounds pretty clear cut in your case - and then you get through all of the physical and “psychological” type of tests. So to me I felt like I had “achieved” something that’s for sure!

Good luck! Here’s 🤞🤞 for you, Ian.

Miles

[Ian57 in reply to ThreeSmiles]

Hi Miles if you go onto youtube and type in my condition, you see a video its 8 minutes 4 seconds long. My consultant brought it to my attention. He said to show it to family and friends to give them a better understanding. Yes it is rare i believe only 1 in 1000,000.has it. My own consultant had head of it but i was the first he had dealth with,