Kidney Patient Guide

Wow, best wishes, hope it's all going well!

It is also hard to guage how tired you really are, because we always operate at a lower energy level than other people. The tiredness that we get is so insidious - I find that I am never sure whether I am really tired or whether I am just using it as an excuse not to do things. Oh my yes, ain't tha...

Thanks, both of you! :D I did have a GA, yes - I reacted fairly badly to it and was a complete wreck for the first few days after surgery, but it was only a short op (under for a couple of hours) so I figured it'd be out of my system by now. I think you're right that some of it might just be because...

Hi there I'm sure this has been asked before so my apologies in advance but I hope some of you may be able to share your experiences. I've got PKD; I recently had some keyhole surgery to remove a large liver cyst five weeks ago. I'm physically recovered from the op, but since I've been back at work ...

I'm always surprised that so many of you seem to prefer PD over HD. I can't imagine having a tube in my belly and feeling excessively full of fluid all the time. As it turns out, if I needed dialysis I couldn't go on PD right now anyway having just had surgery on my liver, but I'm certainly leaning ...

Glad it all worked out well - I'd agree, I wouldn't want to give my medical records, but I'd certainly ask my doctor to write me a summary letter or whatever. Forgive the slight thread hijack but I'm wondering if I could also ask for some advice? I'm still pre-dialysis, eGFR's around 14, Cret 337 la...

I know you're meant to avoid CT scans if you've got kidney damage, but never heard anything about XRays. Hope you find your solution soon!

I've just gone private to get a very large liver cyst removed (I couldn't eat a proper meal or even bend over properly before the op), related to the fact I had PKD. Originally I was meant to have it done on the NHS, but they screwed up on administration (7 months just to get a referral appointment ...

What gives him to right to tell you off for that? Why is it that some doctors are so paternalistic in their approach to patients, after all we are adults, not children? Sometimes you have to take drastic actions to get results, and clearly in this instance it worked - Good on you. Famous last words...

I'm working on a NHS project called 'the Expert Patient Programme' It aims to help people live with chronic or long term illness and manage their illness better. Google the programme if you're interested and see if it is going on in your area if you need extra support. It might be for you. That'd b...

*update* I saw the liver surgeon today and I'm now having liver surgery in two weeks' time. :shock: The main reason I think I managed to get seen after being ignored for months is cos I obtained the email address of the consultant and contacted him directly. He told me off for doing so in our consul...

I'm quite likely to need surgery on my liver very soon as there are some very large cysts in/on it which need to be removed. Is this going to mean they go through my peritoneum, and if so does that mean I won't be able to do PD if I need dialysis? They said they're gonna do the surgery laporascopica...

only_broken - I have to agree, actually. I found that there wasn't much going on with the PKD charity and have found far more useful info here than I ever did from them... hope we've been useful in some way!

Taking BP medication feels like a huge deal when you first start doing so, especially if you're told it'll probably be for life - that happened to me at the age of 25 and I resented it hugely. However, I *know* that dropping down to a regular BP of 125/70 has protected my kidney function, and it has...

Mine are apparently not heading in that direction yet - though I know they're large enough to be 'palpable' (ie you can feel them through the skin - a favourite test for medical students I gather, to see if they recognise the PKD symptoms). Ain't that the truth!! Last time I was in hospital, every ...