suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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Postby Vicki » Wed Sep 29, 2004 2:30 pm

Hi, I'm Vicki. I'm 21 from Cambridgeshire.

I have FSGS which was diagnosed in October last year. At the mo, everything seems ok. My consultant has given me 2-10 years til my kidneys give up (rather a large time scale!!) so I'm not really sure what's going on.

I got married in May and live with my husband and our greyhound Boo. As long as my health's ok, we're hoping to try for a family in a year or so.

Although everything appears to be fine, I do end up feeling really tired sometimes and can't drink alcohol or I have a hangover for about a week! :?

My hobbies are walking, travelling, music, driving, etc, etc.

Would like to hear about your experiences and comments.

Take care,

Vicki xx
Posts: 27
Joined: Mon Aug 16, 2004 1:40 pm
Location: Cambridgeshire

Postby JMan » Wed Sep 29, 2004 4:20 pm

Welcome to the board Vicki..

Hope you enjoy it here:)

The people are pretty friendly and don't often bite:)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Posts: 3419
Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

Hi all!

Postby Doolally » Fri Oct 01, 2004 6:06 pm

Hi :wink: My name's Ali. I'm 28 and from Eastbourne in the UK.

I have MCGN (Mesangiocapillary Glomerulonephritis) - have been ill for four years. I'm taking Azathioprine having swopped from Cellcept two days ago with a view to pregnancy in the nearish future (any help on pregnancy / kidney disease / immunosuppression would be much appreciated). I'm also on Prednisolone to cover the transition and because I'm leaking a lot of protein at the mo and have a low albumin level. Hope the Pred works (it worked well the first time), the sooner I come off it the better!!!

I moved to the south coast in May with my husband because its great down here! I had to give up work so walks along the seaside are needed most days! Paul is such a star, he always makes me laugh however pants I might be feeling.

Looking forward to talking with you all, looks like a great forum.

Love Ali xx
Posts: 379
Joined: Fri Oct 01, 2004 5:20 pm
Location: UK


Postby neil33a » Thu Oct 14, 2004 11:12 am

:D Hello everyone.

I can't re-introduce myself as i've only just joined,,,but here's a little about me anyway.

I'm Neil, 33, living in Devon (UK). I was diagnosed with ESRF in April 2002 and have just started haemo. (2 sessions so far,, total newbie huh!).

I love movies, music, snooker and all kinds of stuff really.

My friends and family are great,, but sometimes they're a bit too .. :shock: about the whole kidney thing. So i wanted to find somewhere to chat with people who have been there and done it. I ended up here a few days ago.. god help you all :wink:

Anyway.. i hope to be here quite regularly, and look forward to getting to know how this whole 'bulletin board' thing works.

Hope you're all having a good day. Bye for now.

Neil (aka Swarthy, Swarthers, Neelix, etc etc). :)
Posts: 2
Joined: Tue Oct 12, 2004 2:59 pm
Location: Devon

Postby JMan » Thu Oct 14, 2004 11:23 am

Hi Neil..

Welcome to the the strange place that is the KPG board :)


"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Posts: 3419
Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

Postby oldborris » Thu Oct 14, 2004 11:43 am

Hi Neil: Welcome. I wouldn't say that it is worth while getting renal failure just to have an excuse to become a member of this most exclusive club but if you are determined to get renal failure anyway, then this club is one of the best ways of making the most of it.
Posts: 266
Joined: Fri Apr 23, 2004 1:01 pm
Location: Fulham, London, U.K.

Hi All a re-introduction

Postby MANCHESTER STEVE » Sat Oct 16, 2004 10:11 am

I think it was Lewis Carroll who said start at the beginning and finish at the end, which has always seemed pretty good advice to me so here goes I shall start at the beginning
I was 2 when first diagnosed with kidney problems
But it wasn’t until I was 16 when the kidneys failed and I was put on to haemodialysis
I was fairly lucky because about one year later I received my first transplant at the MRI
During my period on dialysis with the help of my local college in Oldham and the support of my family I carried on full time education and gained a onc in engineering which after the transplant allowed me to start work as an apprentice draughtsman/engineer
Nearly caught that disease called marriage once and even showed symptoms of engagement but shrug it off and played ‘hard to get’ ever since (although its still in the system and will properly get me someday)
The transplant lasted about 12 years when I had to returned to capda
For 2 and a half years I was capd then with the help of my home sister I went onto apd night time dialysis for a bout 2 years then for no other reasons than social reasons went back on to haemodialysis. Which brings me to January last year when I had my second transplant, which is working famously (touch wood)
Live life. Love life. Donate to give life
Posts: 108
Joined: Sat Oct 16, 2004 9:44 am

Postby JMan » Sat Oct 16, 2004 1:19 pm

Lewis Caroll???? What, no Plato, Aristotle or Confucius? Welcome Steve


Posts: 3419
Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

Postby jooms » Sat Oct 30, 2004 7:03 pm

Hello, I am Jan. It's my wife, Beth, who does this dialysis stuff. I do the computer for her because she doesn't want to ruin her eyes like I've done to mine; she has already too many other things going wrong with her and she is determined that she'll try to keep her eyesite.
She was a late referral for RRT 15 years ago in Glasgow, Scotland. 2 years later her brother flew in to donate a kidney and that lasted less than 2 years. Back on CAPD until January this year when a bad dose of peritonitis meant permanent haemodialysis.
We live just outside Inverness and she gets good treatment at Raigmore Hospital (her 2nd home). We have a 19 year old daughter away at university sudying biomedical science.

Beth has the usual associated problems - hypertension, anaemia, and, recently, calcification.

I joined the forum because I'm interested to learn about treatments and medications, and opinions of others about them.
Posts: 97
Joined: Sun Oct 24, 2004 4:22 pm
Location: Inverness, Scotland

Postby Rhonda » Tue Nov 02, 2004 4:16 am

My name is Rhonda. I am new to this site. I started on CAPD the first time back in January of 1985. I then had a kidney transplant in March of 1988 that lasted me nearly 15 years. In October of 2002, my transplant failed and I was put on hemo for a short while until my cath healed for PD and now I am waiting patiently to get back on the transplant list. That is supposed to happen in April of 2005. I am 40 years old and my husband and I were married for 20 years in June. We have owned and operated our own business, a meat processing plant, for the last 17 years. I have enjoyed meeting and chattting with all of you on the chat site. Hope one day to visit with all of you.
Posts: 1
Joined: Sat Oct 30, 2004 10:01 pm
Location: Clarks, Nebraska USA

Hi Dawn

Postby dawnrob » Wed Nov 10, 2004 2:32 pm

Hi I'm Dawn - 34 Live in Lincolnshire in England.

It was discovered that my husband Simon had kidney problems in 1991 when he had knee surgery , but we were not made aware and it was never followed up.

About five years later started getting more serious, with blood pressure, blood in urine, fatigue. So started consultations.
So far things haven't worsened significantly other than a lot of gout suddenly starting last year.

Biggest issue is that our consultant is arrogant and unhelpful. Will only supply information when asked, we are not warned or given any helpful information as to diet, side effects, things to expect.

Generally we are very lucky and try to live life to the full :)
Posts: 13
Joined: Wed Nov 10, 2004 2:22 pm

Postby Robert » Fri Dec 17, 2004 10:16 am

Hi I joined this site yesterday.

After reading a few post I've realized I'm pretty clueless as to what is going on with me.

I'm 45, married, no children and living in Cornwall, UK.

I was taken in to hospital 4 years ago with high blood pressure (220/140 if I remember correctly). This was brought down with a multitude of drugs and is now fairly stable, 2 years ago my renal consultant changed a couple of drugs around to try and get round the problem of tiredness, 2 days later I started to have heart attacks, I was admitted to hospital for 5 weeks and ended up having a couple of stents., needless to say the drugs that were changed were changed back.

I haven't had an actual diagnosis other then I have kidneys working at 25-30 %, and no one knows why this is so. I've had to stop work because I get so tired my eyes hurt after working for an hour or so , this has been attributed in the main to the drugs I'm taking to control my blood pressure.

A year ago I started to have joint pain so I was put on some anti-gout pills which seems to have done the trick other then my left index finger which was operated on in April and is now much better, my right knee seems to be hurting the same as my finger did, so I'm seeing a surgeon Monday to see what he thinks.

Like Dawnrob above me I don't seem to get much info from the people I see, hospital visits consist of a few minutes while the Dr takes my blood pressure asks me how I'm feeling (same as i felt the last time I you asked me) and I'm given another appointment in 3 or 4 months time. My Gp is a much better source of information and support to me, but tobviously he's limited in what he knows and a little reluctant to get to invlolved because of the heart scare.

Sorry my intro turned in to a bit of a moan :)
Posts: 16
Joined: Thu Dec 16, 2004 7:53 pm
Location: Cornwall

Postby JMan » Fri Dec 17, 2004 11:49 am

Welcome to the board..

On the 'lack of info ' thing . Yes this seems to be commonplace. Even after 23 years as a patient. I am still realising that to a large degree the 'buck stops with ME' and that I need to push for care & info to manage my health to the best. I guess I still expect to be 'cared for' in the conventional sense. Sadly the NHS isn't always the 'caring profession' that it sets out to be on paper. ALthough there are some very good people out there. Hang onto them if you find them :)

Write those questions down and keep asking, learning etc..

Check out the links in my Sig. including the chat (as mentioned by Rhonda)
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Posts: 3419
Joined: Fri Apr 23, 2004 10:21 am
Location: A small vyllage in Ye Olde London Town, An IÆ’land, Planet Earth, The Universe

Postby laurab » Tue Dec 21, 2004 1:31 pm


I joined the board last month. My husband Alan is the one on dialysis, but you would be forgiven for being confused as I constantly talk about 'my' machine, 'my' deliveries etc.

He started APD in Oct this year, and is really struggling with it. We have a Fresenius sleepsafe machine (on to our second one already!) and it alarms all bleeding night - sometimes about 12 times a night. So as you can imagine we are both a bit rough looking through sleep depravation !!

He is currently off work and is so bored sitting around the house. I have been trying to encourage him to get out and about, but he is so constantly exhausted he is not up for it. His leg muscles seem to be fading away, so much so that his legs have actually given way on 4 occasions and he has ended up on the ground. The hospitals stock response to this fatigue seems to be 'give it time' - but how much ?? Has anyone else experienced this extreme tiredness ?

I have looked at a few pages on the board, and have found it a real eye opener as far as other peoples experiences go.
I am trying to get Alan on line during the day to pass some time and learn more from you guys, but I'm afraid he is a bit of a technophobe so for the time being I will have to act as go between !

Well lunchtime is over, so I better get back to the grind.

Merry Christmas to you all, and a happy new year.

Look forward to reading any replies

Posts: 2
Joined: Mon Nov 29, 2004 8:58 am
Location: Renfrew, Scotland


Postby xXx Holz xXx » Sun Jan 30, 2005 12:22 pm

hi, I'm new! my names holly, i'm 17 and from Warrington in cheshire, i was diagnosed with kidney failure on 3rd of january, so still getting used to the idea that my kidneys are broken! I have been on haemodialysis for the past 3 weeks and everything is going well... i am going to stick with haemodialysis for the moment and so have had a fistula made for easier access, this will hopefully be ready in a couple of months!

i'll probably have loads of questions to ask you all as i get more use 2 my situation! :)

hope you are all well,
Love Holly xXx
xXx Holz xXx
Posts: 556
Joined: Sat Jan 22, 2005 6:29 pm
Location: Warrington, Cheshire, UK


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