Hi there,
Welcome to the group. There have certainly been others like you here over the years. You probably have the gene for PKD 2 which tends to show symptoms somewhat later in life and less severely. Most never reach end stage renal disease. With normal kidney function at your age, this will probably never give you any significant problems, apart from the pain you’ve experienced. Liver cysts only very rarely cause issues requiring treatment. Follow the rules to preserve kidney function: drink plenty of water; keep sodium intake low; avoid caffeine and NSAIDs; drink alcohol only in moderation - basically make healthy life choices. Then carry on as normal.

thank you Chewitt! I am relieved by your words. The Nephrologist said PKD 2 occurs a little later than my age so I am somewhat in between. But I am so happy to hear what you have to say. so far no one has really said this to me!
I will follow all of this advice ( kidney diet) and continue to get regular blood work. I know there is a new medication out there and the doctor said I might be a candidate for this. Many thanks to you.!!

The nephrologist is talking about Tolvaptan. The rules for who qualifies are different in each country but in the UK you need to show rapidly declining function, which you don’t have. It may not be worth your while suffering the side effects given that your kidney function may never be seriously compromised.

Hi MarkoJ

I am currently on Tolvaptan or here in Canada it’s also called Jinarc and it look like you could be a candidate for the drug but that’s for Canada like chewitt said different countries have different criteria for this drug. For me Jinarc helped with my pain. Which is great but you have to also look at the other side are you ok with increased thirst and urination because with this drug you MUST drink more which leads to having to go to the bathroom more. And let’s not forget that bothersome monthly blood work that you MUST do in order for the pharmacy to give you the medication. In the beginning I will admit it was a hassle but now I don’t even think about it.

thanks coolp and Chewitt--

that drug just got approved in the USA in April of 2018 and the Neph. said he would re-eval me for it in 3 months.

right now I have a UTI ( hope thats not too much information) and I guess I better call the doctor. Its Sunday here and I work 12 hours tomorrow.

but I'd better not mess around with this right?

Don’t worry MarkoJ, we don’t really have TMI here. You’re right about the need to treat UTIs promptly. A bladder infection can spread to the kidneys and cause further damage. Drinks lots of water and see you doctor ASAP.