Gross hydronephrosis

[Braegorse]

I'm really sorry if I offend anyone by joining this community when I don't actually suffer the condition but my consultant has recommended speaking with PKD patients to try and get some support for my condition. I suffer Currently with Gross hydronephrosis and am scheduled for a nephrectomy in the coming months. I suffer awful anxiety and I'm really trying to search for someone who understands and would be good enough to offer some reassurance. My kidney measures 23x17 and its suggested it could weigh up to 10lb. I suffer awful pain and the kidney is pushing on my stomach and I'm not going to lie..I'm scared. Thank you for reading

[123springtime]

Hello there ! It doesn’t matter about diagnosis if any group can offer some support and advice then that’s a good thing. I’m sorry to hear you are in pain with your condition. I suffer kidney pain too what’s yours like can you describe it? My kidneys squash my stomach and I feel “full up” all the time. I can’t eat big meals can you? It visibly shows on my tummy and being female it looks like I’m pregnant. Is your kidney losing function?

[Braegorse in reply to 123springtime]

It's hard to describe the pain but it's sometimes an ache, other times a burning, a stabbing feeling I experience too. My left kidney is pushing against my stomach and like yourself some days I find it a struggle to eat. My kidney has lost all function but thankfully the other one is working well xx

[123springtime in reply to Braegorse]

Thank fully you have your other kidney working well 😊 yes I can relate to your pain description I feel like that. Do you struggle to bend? Like tie shoelaces ?! I do. So when is your op scheduled for kidney removal? I have had couple kidney ops not removal as although both mine are enlarged with cysts I have good function thank goodness 😊

[Braegorse in reply to 123springtime]

Do you know the size of your kidneys? I'm scheduled for August bit have been told ot could be delayed. I currently have a UTI also. Struggle very much with bending and lifting. It worries me sick at times xx

[123springtime in reply to Braegorse]

Yes mine are 11cm x 18cm and 13cm x 15cm on my last scan and I was told they meet in the middle due to cysts !! How bout yours? Yes bending is difficult and I get awful back ache round kidney area. It’s the full up feeling I hate as I don’t fancy eating much. UTI ‘s are the worst I hope that clears for you soon x

[Braegorse in reply to 123springtime]

My left measures over 27 x 18 and my right is normal size. It really does grind you down xx

[123springtime in reply to Braegorse]

Oh wow that’s huge. Yes pain is very tiring isn’t it. I try not to complain but sometimes you just get fed up with yourself! I hope your surgery doesn’t get delayed and goes ahead for you as it’s awful waiting around for the go ahead you probably want it over and done with x

[Andek]

Hi. Are you on Facebook? There are kidney groups on there that are much more active than here. Loads of people to offer advice and support, at all stages of their kidney journeys and with loads of different reasons for their kidney failure. Hope you find people who have experience that can help you.

[123springtime in reply to Andek]

Hello I’m not on Facebook is there a good PKD one on there? Maybe I should sign up?

[Andek in reply to 123springtime]

Absolutely! I'm in two pkd groups and the kidney care UK group. I've learnt so much from them. No question is silly, ask anything you want to know and they will give you lots of answers. Obviously everyone's journey is different so some people's experiences will be very different to your own. Definitely worth signing up to access the amazing support network that's out there.

[Braegorse]

I don't use FB myself, I wish there was more help available. I've contacted my local and out of area hospitals in the hope of finding support groups but with not much luck