Hi billylyne5,

So sorry to hear about your most recent problems. It maybe that when cysts rupture, leucocytes are released in response to the damage. When I was admitted to hospital, I did see a renal doctor - eventually. If I had been known to the renal team at the time ( my GP had decided I didn't need to be seen regularly at that point), it would have been much easier to involve them. After that, I insisted on being seen by the renal team and remaining known to them, even though guidelines say that in the earlier stages of CKD you can be monitored by your GP. I think PKD requires consultant guidance sometimes. My GP was very keen to hand over responsibility for me to specialists, too.

Can you think of anything at all in the days before you became ill again that could have caused this? Did you do any heavy lifting, running, sport, activities which are jarring etc? I know how hard it is to change your behaviours, but you need to try to identify whether there is any way in which you might be able to reduce the chances of this happening. If you're anything like me, you may find that you have a very low capacity for certain activities eg carrying just a couple of items of shopping will cause me pains for days. The rule for me is NO lifting, NO carrying, NO jarring activities.

I hope you're feeling better soon.

Chewitt

I have been trying to change my renal consultant to the hospital I am admitted to when I'm ill but they are not offering any appointments on chose and book so it's been a nightmare with that.
My neph at a different hospital over an hour away,who I saw the day before I was ill said nothing I did would make a difference to me staying well or not. I can't pinpoint anything out of my normal routine that could have set it off, but who knows. I think it's just going to be how it is at least at the moment. The biggest hassle is being off work sick Bizarrely my egfr is improving currently at 78 best it's been for years, it was down to 51 back in September, so no idea why that's getting better.
My nephrologist did say he'd like to know why I suddenly have kidney stones and they might do some 24hr urine test for that, but he let me know.
I just keep plodding on, my work colleagues can't understand how there's no treatment and that I just have to get on with things.

I've had that "Can't they do anything?" question fired at me for years, like there's a magic wand doctors can wave to fix everything. It may be something that is part of your normal routine that is contributing to the problem, which would explain why it happens so often. It took me a long time to realise that supermarket shopping was causing me pain every week.

I wondered whether a second opinion from another renal consultant might help, even if it's not the one you want to transfer to? Can your GP not write to the consultant you want to see to ask him to see you, rather than going through choose and book? When I saw a liver specialist, this is how the referral was made because there
is no choose and book for it.

Hang in there.

Chewitt

Yes that's what my GP is going to do, as it really needs sorting.
I feel like I daren't do anything in case it makes me ill I have had periods like this before although never over this long a period, but then nothing for years then just out of the blue last sept it's been a right pain. The neph last week was adamant it was nothing I was doing and that there was nothing I could do to prevent it happening, which is frustrating, I'm not sure how to figure out what it might be, my hubby often works away so I do have to do lots of household chores but I keep these to a minimum due to having other health problems that stop me doing heavy stuff like shopping, hoovering and ironing.
I do work too so need to manage that as well, which I'm a bit worried about having to continually take time off with illness.

Bending is another thing to consider. This can cause problems and pain for me, though I struggle with it now simply because my belly is in the way. I also discovered that just walking around in footwear without cushioned soles causes me jarring and considerable pain (ruptures?) It may be that something is pressing on your kidneys and just moving in certain ways causes ruptures. The severity of your pain, however, suggests that there may be bleeding into cysts. After I was hospitalised, my GP agreed to put pain meds on repeat prescription for me so that I could always have them available should I need them. I don't really use them now as I would be unable to drive if I did and they don't help enough to warrant disrupting my life. I've modified my life instead to try to avoid these acute episodes. You may be able to avoid hospital if you know nothing can be done and just need pain relief if you have Oramorph on repeat.

That's what I've done and GP is happy for me to have the oramorph if I need it, I'm happy to manage the pain issue myself, the only reason I ever go to the GP is if I actually feel unwell,- temperature, pain feeling ill so I have to check if there's an infection, then of course they do a urine dip, which has so far always shown things, so the GP sends me to hospital as they are never sure if it's infection, bleed or possibly a kidney stone ( I hove lots in both kidneys). And because it's not clear they feel I should get seen at hospital, which I do understand.
I've had a couple of episodes of awful pain but not actually feeling ill and I just took oramorph and stayed at home for a couple of days didn't need to see GP at all then.
My hubby is trying to wrap me in cotton wool but I'm not too good at doing nothing lol

Hi billylyne5,

I've had chronic pain from infections. One kidney caused more pain than the other. I was missing so much work that I was at risk of losing my job, so we removed the more painful kidney. Because of other issues going on, transplant was going to be inevitable for me, so it has moved things along (although I still manage around a 25 eGFR).

Sometimes one kidney isn't pulling its weight and is causing too many problems, in which case, get rid of it. There is a simple test they can do that will tell you how much each kidney provides to your overall function and from that, they can estimate the effect of removing that one kidney.

To me, this would only be a consideration if one kidney is causing all of your health kaos and preferably if it underproduces your other kidney. Mine turned out to be the more painful kidney performed 45% of the function and the other 55%. Also, this might not be for everyone. But for me, it had become a huge quality of life issue.

BTW, my kidney was easily removed laparoscopically. I was in the hospital 2 or 3 days. I think I could return to light work after a couple of weeks.

Larry

Gosh that's quite an extreme measure to go to, and my neph wasn't very interested in my hospital stays, he just shrugged and said it can be like that. They only seem to be bothered by how good my kidney function is which at the moment is pretty good, last week my eGFR was 78 the best it's been for a long time. My left kidney is the more troublesome one and is also duplex.
My mum who has a huge liver and huge kidneys plus a transplant kidney has asked for them to remove her kidneys but the won't, it doesn't seem that come in the uk that they remove them.

They usually leave PKD kidneys in unless you have chronic infection (my do).

But one thing that I LOVE about my my doctors at KU is that quality of life is something they take seriously.

I am 49, on disability. Even though I have a eGFR of >20, things are moving forward so that I can get my life back and be a productive member of society.

Larry

My consultant did say that sometimes, if space becomes a big issue (we were discussing my enormous belly) they will remove a kidney to make more space. Of course, this then hastens you towards needing renal replacement therapy. I have heard of others who have had a kidney remived because of intractable infection.

In some ways I am glad that I have infection and horrible pain. Because of it, I have been allowed to have a kidney removed. Matter of fact, if I wanted to, I could have them both removed. Instead of me being a burden on society (like many people, I currently have no choice), I can go ahead and have a transplant and get on with my life soon, instead of years down the road (2?, 5?, 10?, never?). I am fortunate that I have living donor(s) so that I don't take someone else's kidney from the cadaver pool.

I'm only saying this because there are surely other people like me, that didn't know there were such options. A lot of us have been through a lot and would welcome a better quality of life.

And I don't want to scare anyone,.many people sail through PKD and never even know they had it. I just happen to be on the extreme other end.