Kidney Patient Guide

I haven't visited the Board for a long time - lots of family problems intervened including Altzheimers, depression, 3 deaths, house clearances etc etc etc. But I have just had great news and wanted to thank members in the past who have provided support and answers when I needed them most. To recap, ...

Thanks Elaine & Ruth, good to hear from you all this happened whilst I was in Devon moving a frail relative 200 miles to a care home near us so am getting info second hand from husband who is with Rob. Biopsy went well but have just learned his kidney function is now 50% (from 100% and doing wel...

Hi Folks My FSGS 15 yr son was doing really well on Cyclosporin for 2 years until beginning of May (exams time) when protein / kinase ratio was raised. First simvastatin for cholesterol was stopped, then cyclo changed to Prograf / Tacrolimas. After this the potassium started increasing to 7.1 involv...

Thanks to all for posts & support. Good to hear again from you Elaine. Poor Rachel coping with GCSE's and haemo - I hope the examiners will be giving her the statutory 5% extra for medical or emotional upset (every little might help). Ruth, we caught the FSGS early and immediately went on the dr...

Hi Ruth Robin was only diagnosed 2 yrs ago with FSGS and fortunately has been well, so no transplant as yet and still has 100% function but was resistant to prednisolone and so went immediately onto Cyclosporin. His consultant is Dr Jan Dudley of Bristol Children's renal unit as he is only 15 but Dr...

Hi Folks I see Ruth from Cheltenham is / was online as I logged on, seems strange to know someone else on the Forum must be within 10 miles of me at the moment. It makes this community seem closer and not just virtual. I haven't logged on in a while. Lots (mostly bad news) happening here but my two ...

How about trying some homeopathic remedies? Echinacea in liquid form is a fast acting remedy I give my children (both with KD) when they start with a cold. I use 20 - 30 drops in water for a 4 - 5 day period. Echinacea boosts the immuno system and our neph approved it for short periods. I also have ...

[quote]PS have u seen articles in BKPA Silver Lining from kids & Dr Nurses from Bristol

No Elaine, I looked on the web site www.britishkidney-pa.co.uk web site but couldn't see what you referred to, or is it a newsletter?
regards
BrendaM[/quote]

Hi Folks well there was a follow up article, on page 50, and I don't think any of the info I or others provided was used but it doesn't really matter because in the last week, and due to the prominence of the front page article (and pages 2 and 3) about the twins last week over 21,000 people registe...

Sat morning update Many thanks to all of you who contacted me privately and agreed to talk to the journalist. I spent several hours collating notes, tel numbers, stories etc on Thurs and hope she contacted some of you. I completely understand if you hadn't wanted to speak out - I gave our family's s...

It is Wed night not Tues of course, sorry to confuse anyone
thanks for the replies already, I will report back if we can bring this story together in time.
regards
BrendaM

URGENT Hi Folks Tues 7.45pm Re the story in the Sunday Express last week (5th) I have been in contact with the journalist who is willing and KEEN to do a follow up story but needs case histories to quote, preferably concerning children needing new organs (sorry but that grabs the public's attention ...

Hi Folks I was expecting to see some reaction here today about the lead item on front of UK's Sunday Express paper of yesterday about a family in Wiltshire with twin boys with kidney disease and both deperately needing a transplant. Mum could donate a kidney ..... but to which one? I stood in superm...

Hi Ruth no words of wisdom I'm afraid but as another Cheltenham member I am thinking of you and hoping all goes well. Best wishes BrendaM PS Perhaps when our time comes for transplants (2 children affected) I could ask your advice on local facilities? (although I pray it is far off) PPS we are fight...

Anyone on cyclosporine should have been told by their neph that they should NOT to drink it within a few hours of taking the drug as part of the initial premed run through it says as much on our info leaflet in the pack. We avoid it totally just in case
regards
BrendaM