Kidney Patient Guide

Hello I'm afraid I don't know a huge amount about the system as I'm still fortunate to have a working tx. However the National Kidney Federation has a helpline for such things, they may be better placed to help https://www.kidney.org.uk/help-with-financial-support The Citizens Advice Bureau also do ...

I hear you - I got diagnosed with CKD at 19, been medicated since 24, had tx and all that. It's horrible feeling like everyone else in clinic/on ward is so old. Most kidney units have a young persons' group, and I know the Kidney Charities do. I'm in. my 40s now but I vividly remember feeling as you...

Have a brilliant time!

I just told them I'd had a transplant and they believed me

Glad it's not just me who is so unimpressed! Wonder how much kickback the UKKA could be getting??

I've got mine booked on the 24th

How are other people finding this forced transition away from PatientView? I'm so disappointed, so far PKB and the UK KIdney Association have done (imho) a really crappy job of providing a service to us kidney patients when PatientView was so good!

It's entirely possible to live a full life with that kind of function level, but it's certainly good to know why it's changing. Depending pn your age, renal function does decrease as we get older.

I have my booster jab in two weeks' time. Folks in my renal clinic wear masks as required by the staff but when I was in as a surgical inpatient last week they didn't until I got into theatre.

Hi there! There's not a huge amount of traffic on the forum these days so I'm glad you found us. First thing - try not to worry too much about a single result. It's all about a trend and direction, not the number. Also the reason for the eGFR being what it is, is very important. For example, my eGFR...

There's nothing wrong with it staying up as a searchable archive for folks that find it. If the cost of keeping it up is low I'd like to do that.

In terms of attracting new participants, I think that really depends on whether the Guide in general is going to be maintained as a resource?

Heh to be honest this is by far the longest surviving PHP Bulletin Board I've *ever* used and I've been admins for quite a few. I think Covid has had a significant impact on most online fora and social media groups as far as I can tell in my work. Online behaviours have changed. I guess the question...

I don't think it's entirely dead, but Covid changed so many things. It's probably harder to find for n00bs than it used to be through search engines, too. I wonder ho wmuch traffic the KPG site itself gets these days?

Really? No-one??

Hey folks - as above, I'm curious for PKD folks what your liver experiences have been? I actually had to have surgery on a liver cyst before I'd even got to transplant, but it's not been front of mind for quite a few years. Now though, my liver is completely covered and has massively increased in si...