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Reply For Holly.

PostPosted: Sun Jan 30, 2005 1:23 pm
by Elaine
[b][color=violet][/color][size=18][/size]hiya Holly,
I'm Rachael, from Wiltshire, UK and I'm 17 years old with end stage renal failure! I'm on haemodialysis and have been for just over 6 months, have got a fistula and will start using it soon. I was on peritonal dialysis for about 16months. I'm on the kidney transplant waiting list and have been for about 3 months.

If you'd like to email me then that would be great as I could talk to you and see if I can help you in anway, my email addy is

Hope to hear from you soon. This post will probs say from 'Elaine,' which is my mum as I've forgotten my password!! LOL :P

PostPosted: Tue Feb 01, 2005 10:00 am
by Andy
Hi Holly
welcome to the board. Im 18 and i have had a transplant but i was previously on haemo, and PD.
Ever need some one to chat to just send me an email.
If you use the computer a lot you may like to come and find us in chat

Hope all is well
Take Care
x x x


PostPosted: Wed Feb 02, 2005 10:43 pm
by les
hi everybody,
well my name is les (leslie if i'm being told off) i'm 46 years young, and i live in MANCHESTER ENGLAND
i'm a support worker for adult with leaning disabilities/complects mental health issues, a great job
i've been a diabetic since 1985,(20yrs) i first started with kidney problems in 1992, with a small protain leak, was put on ace-inhibeters and that was that?
then in MAY 04, my GP sent me to the hosptial, with what he thought was kidney problems, and i was in there for nearly 4 weeks, hospt, said not kidney problem but diabeties.
so was discharged, went back in september 04 as an out-pat, and was told i had, ESRF, and would need dialysis within 3 months! WOW what a bomb shell that was! didn't get much sleep that night,
in nov 04 my kidney stopped working and i had tesico lines put in my neck/chest and was in the hospt for another 3 weeks? yuk!
at the moment my kidneys are functioning enough to support me, but have the line in, for plan B (lol) plan A the fistula in 8/10 weeks time?
oh and i'm on the dialysis waiting list, lol other then the above,what can i say, hay life goes on!! smile

PostPosted: Thu Feb 03, 2005 12:02 am
by JMan
Welcome peeps,

You'll see me in here and in the chat on the other site that has been mentioned.

Feel free to get in touch.. My MSN and contact info is on my profile :D

Nice to meet ya:)

Hi Everyone

PostPosted: Mon Feb 07, 2005 8:02 pm
by _emma_
Hi my name is Emma and I am 25, and I live in Runcorn, Cheshire Uk.

I was diagnosed with ESRF in september last year, which came as quite a shock. To begin with I was on HD but I only lasted a week on that due to my phobia of needles! :roll: I have now been on APD for 5 months and despite some early teething troubles it seems to be going ok!

I have also been told that I have a problem with my heart and I am awaiting some test results to determine whether I can be put on the transplant list, so fingers crossed!!! :?

I am really pleased to have found this forum as it is good to relate to others who are going through the same things as it is often difficult for friends and family to fully understand. However, I do have an amazing Fiance who has been very supportive and keeps me smiling :D.

Hope you are all well


Welcome Emma :D

PostPosted: Tue Feb 08, 2005 1:05 am
by JMan
Hi Emma...


Loads of friendly folks here to exchange views and answer Q's (or try to ;) )

Good luck with the transplant list and yep.. SOME teething torubles are normalish with any new treatment.

there are various forums and places to check out..

See the links in my sig

Cheers :D :D


PostPosted: Wed Feb 09, 2005 11:05 am
by Nikki
:D Hi everyone! I noticed that lotsa young people have just joined the board, although I'm getting to the stage where you might not be able to call me young anymore (28!) I was only 20 when this happened to me so I would be pleased to talk to any of you anytime!

Take care-enjoy the board, it nice to talk to people who know what you're going through!

Love Nikki. xx :wink:

PostPosted: Sat Feb 19, 2005 8:56 pm
by SillyYakUK
Hi, I'm Cassie. I'm a 44 year old pagan Coeliac female. I love the bagpipes, Welsh language and campaigning for animal/environmental issues.
I live in Scotland but only for the last 3 years, before that i lived in Ramsgate in Kent for 20 years. I met my Coeliac husband on a message board for our condition about 4 years ago and moved up here to be with him. I'm a personal assistant/carer for people with learning and physical disabilities.

I'm a possible live kidney donor to my pal in Belfast and want as much information as i can get to give him the best kidney in the land :shock: .


PostPosted: Fri Feb 25, 2005 3:07 am
by tina
I haven't been to this site for a while. My son was diagnosed with MPGN two years ago (two separate labs agreed it was MPGN, but one said type 1 and one said type 3 -- we've been operating under the assumption it's type 1) He is now seven years old. In December we were told he was in "remission" after two years of oral steroids, Cell Cept, lisinopril, and then 6 months of IV steroid treatments.

We go back in March to see if things seem to be holding. I've never been able to find other parents that have more experience and can share if their child went into remission and actually stayed that way. If there is anyone out there that can speak to that, it would be helpful.

We were told the biggest indicator of long term prognosis is the scarring on the kidneys at biopsy -- two years ago he had no scarring and we were told that was a very good sign. I hope...


PostPosted: Tue Mar 01, 2005 12:26 pm
by Doolally
Hi Tina,

Welcome to the board! :D

I have MPGN too (also called MCGN). Mine is type II though. It was diagnosed over five years ago. I'm into my second remission at the moment thanks (I say with irony) to prednisolone. I was on Cellcept but have changed to Azathioprine (another immunosuppression) now. Both times I've gone into remission the prednisolone has brought my protien leak down from between 8 - 12 grams to 2 - 3 grams. After the first remission, having come of steroids, I tried reducing Cellcept. This could have caused the quick relapse. This time I'm reducing the steroids but staying on a high dose of Azathioprine. I'm hoping it will keep me reasonably stable, at least for a year or so, as I'd like to get pregnant.

But I'm 28, I can't imagine going through all this at the age of 7. Feel free to email/PM.

Ali :D :D

PostPosted: Mon Mar 07, 2005 12:29 pm
by Cynthia
Cynthia .............age 44 I live in the states Burton Michigan I have had FSGS that I have known of for the last 7 years I was diagnosed with diabetes in may of 2004 and now the docs tell me it is just a waiting game for things to bad my kidney function is at about 50 percent now and with the diabetes they exect it to go down hill faster I have two beautiful childern and a great husband.

PostPosted: Mon Mar 07, 2005 12:59 pm
by Rik
Hi Cyn ... glad you posted ...
I spent years at around 30% before my kidneys decided to go into retirement ...
hope the diabetes doesnt cause yours to retire too soon ...
all the best

PostPosted: Mon Mar 07, 2005 4:57 pm
by Nicky
Hiya, I too have spent a considerable amount of time at 30% kidney function - mine is about 25% right now. BUT - I first went into kidney failure at age 8 as a result of reflux, was on Dickens Ward at Guys in 1979. Anyway, Mr Joyce re-implanted my ureters, & drained off all the yuck from my bladder & kidneys and managed to rescue me from the brink & got me back working at 30% kidney function. He wasn't too optimistic and expected me to need a transplant by the age of ten at latest. I was extremely lucky and with some excellent care from my family and a very energetic lifestyle including swimming, gymnastics & long distance running - I managed to hold out until 21 before my next big bout of kidney failure. I had my poorly times inbetween but over 13 years at 30% function. Spent about 1 year of PD then tx from my Mum & now 34 yrs old, 12 yrs post tx.
I don't know how much more quickly diabetes would make kidney function deteriorate - but sometimes you can keep going against the odds. I hope you manage to maintain a good function for as long as possible and prove to the docs that your odds are good! Best of luck with it all, x Nicky

PostPosted: Tue Mar 08, 2005 9:56 pm
by Rachel
hi im suze im 30 yrs old and have reflux nephropathy and it wasnt picked up until i was 18 and then the consultant told me it was nothing,and he just re-enplanted my ureters,time went by and i had two children( now aged 8 and 3)about 8 yrs ago they said i should have my left kidney taken out i refused and asked to see someone privately.So i started to see my nephrologist and he just said that i would need to see him for the rest of my life every 3-6 months.A yr as last august they noticed that my creatinine had jumped up and they put this down to a blokage .So they put a stent in and of course this didnt make a bit of difference so now im at the stage where they say i need a transplant my gfr is at 9 and last wk my creatinine was 530.Well thats me and i hope this told you a bit about me.................Well that was in march and since then ive had my transplant from my mum and everything is going really well .I cannt beleive how much better i feel and did from the first day (no sickness)
love suze

PostPosted: Fri Mar 25, 2005 1:29 am
by Lauren
Hi everyone,
It's been really interesting reading about everyone!
I had three heart attacks aged 2 weeks old (as you do...), and my kidneys didn't recover. But they struggled on until I was about 9, on holiday in Tenerife. I was suddenly put on PROD, and remained on that for 3 years. On the bright side, I did get 3 seats on the plane in case I wanted to lie down, and my private nurse (or whoever) was called Judy Garland. Interesting for a nine year old.
My first transplant failed, which surprisingly didn't affect me that much as I'd been prepared for rejection. My second's still going, and Sidney's (very original name, I realise) 8 in May. He's from a 16 year old boy somewhere in London, but that's all I know about him. I don't know how much I'd like to know about what he was like.
Anyway. When I was on dialysis I also had a gastrostomy feeding tube put in, and I still don't eat that well compared to other people but I'm off Fresubin and Maxijul now luckily. And the gastrostomy left with the dialysis tube.
I'm now at Leeds University, not having the best of times but only one more year to go. I've got a great family and a fantastic boyfriend, who I unfortuntely don't see very often as we're both at uni.
I'll stop now before I go into depressed mode! I'm usually abit mad and wild, as I'm now living the childhood and teenage years I lost! Plus I'm only 20, so not quite old yet! If anyone needs any advice or anything, just ask! I was lucky in that I'm so used to hospitals - it must be terrifying for the unsuspecting healthy peopel so you have my total sympathy!