I am at stage 4 CKD and have PKD. my ki... - Early CKD Support
I am at stage 4 CKD and have PKD. my kidneys are so enlarged and thro to front of body. does anyone find after drinkin fluid that they hurt
Hi
Just like you, I am stage 4 PKD with very large kidneys.
I believe our condition is unusual, in that the kidneys don't usually enlarge until much later. (My dad's did this after being on dialysis for 17 years.)
To answer your question, mine ache rather than hurt and it feels as if there is not much room in there for anything else. Especially after eating or drinking. Often I wake up with my abdomen feeling achy and stiff. It takes a while to get comfortable again. Feels just like being pregnant again. 
On my last visit to the hospital they offered to remove my kidneys and start dialysis straight away. However I am egfr20 and I am loathed to have them removed just yet as they are still working.
What is your egfr? Have your doctors suggested anything? Are you on dialysis yet?
Hi Mgt8
Hi been to see specialist today. discussion of specialists said cysts too big to have drainage.. removal of 1 or both kidneys is a suggestion and I am thinking about it. been in lots of pain the last two weeks esp after fluid or small meal. as you say not much room for anything. only comfortable when laid on side in bed and bed supports kidneys. my specialist is going to refer me to a urologist to let him do tests to see whether one or two is able to be removed. infections are quite a lot as well over the last year. no space for a new kidney. not on dialysis but would be earlier if have removal but got to weight up whether I would be better with them out and no infections.
thanks for support.
Hi robson38,
It's a difficult decision to make and no mistake.
I'm only leaving my kidneys where they are as I can manage to potter about at the moment; although I do get very tired if I do too much. (My car seat is way back for driving as I understand what you say about the steering wheel. However it's good to be able to drive as it's great to be independent.)
One thing I'm glad about is that they give us the option of choosing when to have this operation.
Although I haven't reached the decision of having one or both kidneys removed yet, I get the feeling that when it IS time to do that, I will know that it's the right decision to make.
Do keep in touch if you can, it's really interesting as our situations seem to be somewhat similar.
Wishing you all the best.
robson38 are you still making urine? if you are you really want to hang on to one kidney until such time as it stops working or you are transplanted.
I have had one removed (5 kg) and although the other one became a bit dozy after my operation and I had a reduced flow of urine it has now woken back up and I am back to weeing for England. so as long as that keeps up I will hang on to it because I would hate to have the very strict fluid intake reduction that I would have to live with.
poppydolly thanks for your reply. I can see where you are coming from. the problem I have is that the kidneys are so enlarged and mould into my tummy and cause so much pain and affecting my everyday life like driving to the shops.( rub against the steering wheel) and causing major problems with my breathing so that is why they may have to take both out if both got as bad function. will leave one if one works better than the other. we shall see.
Hi Pollydolly and Mgt8
saw the urologist last Thursday and the outcome is to remove my right kidney as from the scans that looks and is the worst one out of the two. pain is so severe in both kidneys especially after eating but also need painkillers all the time.
I am scared but he said that by removing it, I will have no pain there, no infection and it will create a place for a transplanted kidney.on Saturday gone less than two days later I have received my preadmission clinic appointment to be next Monday (Sept 1st)
I don't think that Mr Fulford is wasting anytime. he is taking bookings for Oct/ Nov so I have a gut feeling that I will be early October.
I cannot eat much at all now, yesterday I had a beefburger in a bun and small amount of chips and was in agony by 6.30pm so was in bed. that is all that I could eat all day.
now the decision is made I am pleased that things are moving, but still very scared about being put under, recovery but told to get my Christmas shopping done by end of Sept.
will keep in touch.
