Kidney Patient Guide

I remember doing exchanges during long car journeys. When it was cold outside, I would put the bag in the passenger seat footwell and put the blower on it. When warmer, I found that sticking it up my shirt for a while would take the chill off it enough to use. 'Firkle' - that's a good word! Is it yo...

One thing that's worth knowing about tacrolimus, which nobody ever told me until after the event, is that if you are experiencing diarrhoea for any reason, then the tacrolimus absorption can increase significantly. (There's also the issue in such situations about immediately making really sure you k...

I've just seen this thread after writing something about 'gratitude' on another, so I'll add it here, in case of any use. It's not a response to anything above. "Gratitude is a tricky thing. I know as a recipient of two living donor transplants, both donors well known to me, that it's easy to f...

Skyeskye – thanks for the reply. No need to go into any details at all. Just know that you're welcome to ask anything you like here, or just get something off your chest, whether kidney-related or not really. This is usually a very supportive and unjudgemental community. Gratitude is a tricky thing....

Saw this the other day. Probably not much use for those of us already well down the PKD path, but might be for our children one day. Manchester, UCL researchers discover new technique for treating polycystic kidney disease Published on June 3, 2015 – from http://www.news-medical.net/news/20150603/Ma...

Hi skyeskye You (and your husband) are indeed very welcome here. I'm really sorry to hear about your husband's problems. While we know that major problems for donors are rare, we know it's a risk. I've been the very lucky recipient now of two living donor transplants (both donors thriving, I believe...

I was on APD with Baxter for a couple years – looks like others have answered all your questions, though I haven't read in detail. It's definitely worth getting used to how to reprogramme the machine for different times, etc if you need to juggle your life from time to time (late nights/early mornin...

Ticks are common at certain times of the year down here in SW England. I had a couple the other week. They 'bite' and remain attached to your skin. It's important to try and remove them whole, rather than scratching, and breaking off the bodies, as the mouth parts remain in the skin, and can be a so...

Jooles – huge congrats, and welcome to the post-tx roller coaster!

I haven't been around here for some time, great to read yours, and some of the other stories.

Something I discovered - which I wish I'd been told earlier - is that if you have diarrhoea, tacro absorption, and therefore levels can rise, and needs to be monitored. Though it doesn't sound like that's the case for you right now.

This doesn't sound good at all. If you want to get involved locally, 'public and patient engagement' are buzzwords at the moment. Last year, GP practices were given a financial incentive to set up 'Patient Participation Groups'. My GP asked me if I would represent the PPG at a forum meeting for all ...

Hi realsis Welcome. This all does seem really scary and daunting. The night after I went home having been told of my diagnosis my other half ended up calling an ambulance at 6 in the morning, as I'd been up all night having what she thought might be a heart attack - but was just some sort of stress/...

Thanks for digging out the figures Mandy. Only >50% out on the number of transplants - oops! I do know that there are more people 'waiting for a kidney' than the ones registered on the kidney transplant list, for various reasons (I was one once), hence my carefully chosen words. Whether it's as many...

Hi Stephen It shouldn't take that long. In my experience, though it can vary around the UK, EPO is normally prescribed via the hospital. The first dose is usually given to you there by a nurse, who shows you how to inject it - though it's very easy. If your iron levels are low, then you may need an ...

If the pain and other symptoms are still as extreme as you describe, and given your history, I would be very tempted to pitch up at A&E at the same hospital you're due to attend on Thursday. I reckon there's a good chance that they will expedite the scan and/or get you seen by the on-call kidney...