Kidney Patient Guide

Hi Dan, I have 2 x clear flex so your third bag might make the difference? Do you put your top bag on to warm before setting up the machine? I put one bag on the warmer about and hour before I set up, I press start etc until the machine reads 'load the set' but don't load it, this starts the warming...

I found the pouches very hard to get a waterproof seal with my skin so started using tegaderm, I used 4 and overlapped them to get around the size problem, they were far better at keeping my entire tube and exit site dry and no cleaning the skin with wipes etc just stick them on and change them afte...

Hi Wagolynn, thanks for the link, it looks good, I just need to do a bit of maths and work out where I'm going wrong... I'm on dialysis and been avoiding high phosphate foods (and taking my binders), my phosphate was 2.8 last blood test (I think it's supposed to be 1.4 or less?) Do you have monthly ...

Hi JMan, Thanks for that, I did try to download it but can't as it's american :( I might try checking the amounts of phosphate in everything after keeping a food diary. I have spoken to the dietician but to be honest I seem to have a better idea than they do, apart from the very basic info they tell...

Hi, My phosphate is (yet again!) too high - 2.8 mmol/l, I thought I was being good with my diet and taking my binders but I am clearly slipping up somewhere! Can anyone recommend and app for the phone or some way for me to keep an eye on my phosphate in a more accurate way. I struggle with the 'high...

Hi, When we looked into water softeners (and UV filters as we have a well for our water supply) I was told that no one is supposed to drink softened water, they usually put the water softener after your kitchen sink cold inlet to give you a cold 'unsoftened' drinking water tap and then you are advis...

Hi, Re mixing CAPD and APD, from reading your post the main reason he doesn't want to connect to the machine is that he wants to watch TV downstairs for a few hours then go upstairs to sleep at 2am meaning that he won't get the full 8 hours on the machine (is that right?) Obviously I don't know abou...

Hi Nonna, I'm sorry to hear that you're scared, this forum is a great place to get information and find out about others experiences. I can't really help with when your mum will need dialysis but in terms of the catheter it might end up being better that she has it and is ready to go in the future. ...

I know exactly what he is going through, I would never have believed that restless legs could make your life so miserable! I am also on APD (with FSGS!) I was on quinine for ages and it did very little, I found out recently that quinine is for cramps so will not help restless legs (and as I don't su...

I use a small pot (washed out with hibiscrub) add a squirt of hibiscrub and warm water then use a gauze (taken out without touching the middle) dipped in to wipe (away from the tube, as you said) and then redress. I don't touch the exit site (except with gauze).

Hi, thanks for your replies. I'm happy to use carex for hand washing, I expect good hand washing technique is probably as important as the soap that you use! However, not using hibiscrub for my exit site makes me feel a bit nervous (probably not logically at all!) The hibiscrub website does seem to ...

Hi, I have always cleaned my exit site with hibiscrub (as well as washing my hands before setting up the machine etc). I've just had my delivery and the hibiscrub has been replaced with carex hand soap (exactly the stuff you buy from the supermarket, same packaging) I will check with my unit before ...

Hi, I'm on the Baxter machine but I am also a fast drainer on CAPD. I usually sleep through the final drain now (2.5 years in) but always do a manual drain (which is an option on the machine menu, it just tries to drain again) and get another 100-200ml out (standing up, as I open the curtains etc). ...

Thank you, that's really good to know, I thought if you started on steroids that was kind of it and you were on them for the life of the kidney. Do you think there is much choice if your unit uses them as standard? I suppose I will just need to ask next time I go to a clinic.... Re bone density scan...

Hi, Are many people on steroid free protocols? I am pre transplant (on dialysis) but really interested in finding out more about steroid free therapy (I would like to avoid them, as I have seen the side effects in friends post transplant) but obviously wouldn't refuse them if it was less effective o...