Search found 1342 matches

by bigbuzzard
Sun Aug 05, 2018 11:12 pm
Forum: The KPG Forum
Topic: ADTKD-UMOD
Replies: 8
Views: 13496

Re: ADTKD-UMOD

Hi John I just searched this forum for 'familial juvenile hyperuricemic nephropathy' (see search box, top right), and came up with one mention: http://www.kidneypatientguide.org.uk/forum/viewtopic.php?f=2&t=172&p=1056&hilit=familial+juvenile+hyperuricemic+nephropathy#p1056 – posted by Mike back in 2...
by bigbuzzard
Sun Aug 05, 2018 10:56 pm
Forum: The KPG Forum
Topic: Nephrology letter
Replies: 7
Views: 14627

Re: Nephrology letter

Hi Sue That letter is indeed a tough one to decipher. Even if you can work out what each bit means, the important thing is to know what it means in practice, i.e. what's next, or what you need to do. Please don't be upset that more people didn't respond – regular users of this forum, especially the ...
by bigbuzzard
Mon Feb 19, 2018 2:00 pm
Forum: The KPG Forum
Topic: Living Kidney donor loss earning
Replies: 4
Views: 7470

Re: Living Kidney donor loss earning

Paying a donor for loss of earnings is, I believe, at the discretion of the NHS Trust involved. Yes, perhaps another postcode lottery. My experience, at Southmead Hospital, Bristol, was very good. I only dealt directly with the transplant coordinator, supplying her with the details of the costs incu...
by bigbuzzard
Mon Feb 19, 2018 1:54 pm
Forum: The KPG Forum
Topic: How many have returned to work after transplant?
Replies: 8
Views: 12045

Re: How many have returned to work after transplant?

I'm a self-employed professional musician, now aged 50. After my first transplant in August 2007, I was back working a month later, taking it easy, but feeling great. After my second transplant in November 2012, I went along a week after leaving hospital (so 2 weeks post-tx) to a concert for which I...
by bigbuzzard
Wed Nov 01, 2017 11:20 pm
Forum: The KPG Forum
Topic: New Here, Chronic Pyelonephritis stage 1 or 2 CKD
Replies: 3
Views: 7244

Re: New Here, Chronic Glomerulonepphritis stage 1 or 2 CKD

Hi Dick Welcome along. I was one of the crash landers you mention back in 2006 – straight to dialysis aged 38. I have PKD which my mother also had, so I had a bit of pre-knowledge. I discovered this forum a few days later, and so many of the posts here were a pretty key thing that motivated me to de...
by bigbuzzard
Wed Nov 01, 2017 11:12 pm
Forum: The KPG Forum
Topic: Itching
Replies: 4
Views: 9741

Re: Itching

When I was on APD I often had itchy sessions – legs in particular. As jman says above, I was under the impression that it was caused by high phosphate levels. Check your dad's latest blood results (see http://www.rixg.org/results/phosphate.html for more info). Is he registered on PatientView ? If so...
by bigbuzzard
Mon May 15, 2017 9:18 pm
Forum: The KPG Forum
Topic: "Please Offer Me A Seat"
Replies: 5
Views: 10928

"Please Offer Me A Seat"

I haven't been here for a while. Was prompted to drop in by this image of something a friend just posted on Facebook (she has ME).
Image.
You can order one here.
by bigbuzzard
Tue Jan 10, 2017 12:18 am
Forum: The KPG Forum
Topic: About to start PD. 'Pulling Sensation'?
Replies: 4
Views: 8631

Re: About to start PD. 'Pulling Sensation'?

Hi Katelou Just to add to what Dibs has already said, there are various new sensations that come with PD. I remember being told (or reading here) that some of them are due to nerves being triggered in ways that have never happened before within your peritoneum, and perhaps nearby. My PD experiences ...
by bigbuzzard
Fri Oct 21, 2016 9:34 am
Forum: The KPG Forum
Topic: TINU Syndrone
Replies: 3
Views: 8162

Re: TINU Syndrone

That's great to hear.
Yes other people's experiences are really useful. When I was first diagnosed in 2006 with end stage renal failure, i found the stories on this forum really inspirational, And the advice I got here was as useful if not more so than what I got from the doctors.
by bigbuzzard
Thu Oct 20, 2016 3:36 pm
Forum: The KPG Forum
Topic: TINU Syndrone
Replies: 3
Views: 8162

Re: TINU Syndrone

Hi G1970 Welcome along. I've just done a quick google of TINU Syndrome, and found a few medical papers. It looks very rare – as you say! Nobody's ever mentioned it here. I did find a post on this forum which may be a bit more useful . It sounds like you should be seeing a good renal consultant who c...
by bigbuzzard
Thu Sep 29, 2016 9:37 am
Forum: The KPG Forum
Topic: Hello everyone - Back again on here - Jim
Replies: 11
Views: 25094

Re: Hello everyone - Back again on here - Jim

Hi Jim How's it going? I missed your original posts back in June. I'm one of the moderators on this forum, and if you lost a password, we can fix that. Send me a Private Message or email if you like (click on my profile name and the options are there). I also attend Exeter Hospital – though live the...
by bigbuzzard
Thu Sep 29, 2016 9:30 am
Forum: The KPG Forum
Topic: TB
Replies: 2
Views: 6320

Re: TB

Hi Dean

Great about the transplant going well. Sorry to hear about TB. Looks like you've already searched online for support; did you come across this group, TBAlert.org?

Good luck.
by bigbuzzard
Wed Sep 28, 2016 10:28 am
Forum: The KPG Forum
Topic: Extended release Prograf [and Envarsus/Adoport]
Replies: 7
Views: 18941

Re: Extended release Advagraf [and Envarsus/Adoport]

Envarsus is clearly a generic version of Tacrolimus. I haven't come across it yet. There's another that's commonly used now in the UK, which is Adoport . This ( has been discussed here a bit before ). I was changed to Adoport on the day of my second transplant in 2012. For the next few days, my tors...
by bigbuzzard
Tue Sep 27, 2016 1:34 pm
Forum: The KPG Forum
Topic: Extended release Prograf [and Envarsus/Adoport]
Replies: 7
Views: 18941

Re: Extended release Prograf

Everything Rik said. I'm now on Advagraf (one pill every 24 hours) which replaced Prograf (one every 12 hours) and the change was very smooth – completely unnoticeable in fact. It seems to be working just fine. I was irritated when Advagraf was introduced, in particular by the way it was introduced ...
by bigbuzzard
Fri Sep 23, 2016 9:25 am
Forum: The KPG Forum
Topic: suggestion... how about introducing ourselves??
Replies: 933
Views: 1886194

Re: suggestion... how about introducing ourselves??

Hi Marc Welcome. Hope you find something useful here. If not, start a new topic and ask. I lived and worked in London for years. I thought I could remember seeing a building somewhere called the Shaftesbury Hospital but couldn't remember where. Just looked it up: http://ezitis.myzen.co.uk/shaftesbur...