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 Mike » Mon Jan 09, 2006 3:25 pm

Hi Tom,

Not sure why but it looks like noone has welcomed you to the board yet? Well anyway welcome to the board :D

I'm on APD (15 months) from FSGS having done PD for the first few months after starting Dialysis, hope it is all going well for you and I totally understand what you mean about having a 2 litre bottle of something :shock: I dream of Scrambled eggs & a big glass of lovely ice cold pure orange juice :wink:

Hope your well

Mike :D
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Postby tiffany » Mon Jan 09, 2006 7:52 pm

hi iam new just started dialasis dnt have ne benifit from it yet had 4 i also have a line in my neck while waiting for fistula i dnt know wat benifits iam entitled to info plzz
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Postby Julie » Tue Jan 10, 2006 9:49 am

Hi Tiffany,

Welcome to the board. Firstly I just want to say that I hope you will soon start to feel better as your body gradually adjusts to having the dialysis - and that can take a lot longer than initially you may think - many never adjust to it at all and others can be quite well - everyone is different. I'm thinking of you as I'm sure everyone here is and hoping you will soon start to feel better.

With regards to benefits, does your renal unit have a renal social worker? Many do, especially the larger ones, but sadly many don't. If your does, you should ask for an appointment as he/she is the best person to advise you on what benefits you may be able to claim. Unfortunately, being on dialysis doesn't automatically qualify you for benefits such as Disability Living Allowance (DLA). Many people are quite well on dialysis and are able to continue working and being active. Others don't and may have to stop work because they are too ill, don't have the energy any more and suffer from lots of side effects from the medications and the treatment. And a whole myriad of anywhere in between. The allocation of DLA may largely depend on these factors.

Good luck and please ask as many questions here as you wish - there is a wealth of experience amongst the users here that can only help and support you as had been my experience over the last 2 and a half years of visiting this board.



Postby tommc » Tue Jan 10, 2006 11:01 am

Hi Tiffany try theres info on benefits there. Once you get used to dislysis its not to bad and getting rid of that neck line will help. Hope things go well for you

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Postby jenjen » Tue Jan 10, 2006 12:34 pm

just realised I never really introduced myself to the board...

Diagnosed out of the blue last July after returning from living in South Africa. I went to try give blood while I was there, you know, do something nice, and they wouldnt take it as I had stupidly high blood pressure and hectic anaemia. Got back to the UK, BP even higher, so my GP decided to get blood tests just to make sure everything was ok.... summoned the next day into the hospital, although by this time I was at the airport flying to France to meet my parents... of course I panicked the whole time I was on holiday, got back and was diagnosed with ESRF and a kidney function of 10% ....yikes! It was a shock, but glad they caught it before I collapsed or something.

Been on PD and waiting for a transplant now since November, so I'm still fairly new to the whole thing. Its ok, not as bad as I was expecting. Still a hassle, but I can fit it around my life, although it rules out my life dream of sailing the whole way down the Amazon river for the time being.

Oh yeah, and I'm 26. Damn this kidney thing for screwing my plans up!!!!
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Postby tiffany » Tue Jan 10, 2006 9:25 pm

hi iam tracy 36 mother of 6 children always had kidney disease but just got over xmas b4 i had to start pera dialasis not bad just never sleep waiting for the call also,need to get back to shopping plz email me of pm if u feel like a chat bye good luck al
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Postby Bear » Wed Jan 18, 2006 4:09 am

G'Day - 'Bear' from S.E. Queensland, Australia (but originally from S.Wales, U.K.) I guess I started, or was already into, renal decline in the early 90s. Everyone (wife, colleagues, mates) telling me I had high b.p., I got it checked when taking my daughter to doc., to sign her off from a bout of flu/asthma.
He sent me straight to hosp., where I spent 2 weeks having my b.p. (it _had_ been 275/150 believe-it-or-not! :shock: ) stabilized. I then went back & forth to clinics & had a biopsy & was vaguely told about IGA nephropathy. But my (mis)understanding was that this was a one-off thing that had just left me with some kidney damage.
So, I was put back under the care of my G.P., where a comm.breakdown meant that he didn't know I had IGA. So when the "final crunch" came it was all a bit of a shock. I had one day going thru all that normal pre-dialysis patients have 6 months or more to absorb, then the following morning was in for a Tenkhoff catheter ! :o
But basically P.D. didn't work for me. So 2004 was a 'wasted year'
This (past) year I got the fistula, then had it moved, then got on home training. THings are looking up & life is once again worth living ! :)
IgaN since when?
Tenkoff for P.D. Feb '04
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Postby Julie » Wed Jan 18, 2006 9:43 am

Welcome to the board Bear. Glad to hear you are feeling better on haemo.

My husband had a bad experience with PD too - seemed to be working fine for a few months but what we didn't realise was that it was causing scarring inside it peritoneum.

He's now on haemo and although PD suited his lifestyle more, he is more stable on haemo. Swings and roundabouts. Both have pros and cons and a lot of it is how each individual takes to it.

Hope you are able get back to surfing. :D


Postby Monkeyspoon » Mon Jan 30, 2006 10:31 am

Hi Everyone,

My name's Owen. I'm 21 and live in South Wales.

I discovered I had CKD in may 2005 and very recently i've learned that im about to start dialysis. Im so glad I found this forum, I've spent the past 9 months feeling quite isolated, it is important to know other people are going through or have gone through what is happening to me.

I look forawrd to sharing views and having questions answered by you all.


Postby Fred Caldwell » Tue Feb 07, 2006 2:55 pm

Hello Folks. My name is fred. I'm pretty new to this game but then I'm only 82. My kidneys are failing due to gout(I hate port). I was in the army, Parachute regiment and the SAS during the war and my post war career was in the Fire Brigade. I had some tough times and at least one near death experience in 1945. but when I read of the problems some of you younger folks have with your ailments..especially Rachel..I realise how lucky I've is sweet..fight on.
Fred Caldwell
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Postby Gerry Thompson » Sat Feb 25, 2006 8:10 pm

Hello folks, I'm Gerry and have been a Kidney Patient since I was 19 (now 41) and finally ran out of luck yesterday. I have Polycystic Kidneys and am now preparing for dialysis. Can't make up my mind as to which method to use yet (if fate allows the choice). I have noticed some pretty mixed views on the notice board and would appreciate some pro's and con's from you. I lead a fairly active existence. I'm married to Karen and we have two boys 13 and 10. We are heavily involved with scouting (I suppose camping in the wilds is out of the question now) and like most folks, we wish there were more hours in the day to fit everything in. Oh, and I'm trying (painfully) to learn the guitar and my wife is dreading the thought of 8hrs practice while I'm sitting on dialysis :lol: I've got SLE (Lupus) and Diabetes (type2) and managed to cope with most things (as long as I avoid cheese and tomato anyway) I think of my life as; smiling with a limp, as the old song goes. Though the hardest thing I'm finding is sitting still doing nothing, can anyone give me tips on how to cope with the bordom I'm going to face on dialysis?
I hope I havn't sent anyone to sleep with this monologue and I look forward to reading these pages. After all, I think we are all members of a pretty exclusive club!
Gerry 8)
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boredom on dialysis

Postby Elaine » Sat Feb 25, 2006 8:29 pm

Hiya Gerry welcome to the board.

We have had this topic about boredom discussed here a few times see the link- search dealing with boredom on the search engine and you 'should' get a few messages regarding this topic.

Was also trying to find other posts too thta are in here somewhere fairley recently probably to do with wot do u do on haemo poss?

Hope that is helpful and good luck to you.

Elaine :D
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diversional therapy on haemo

Postby Elaine » Sat Feb 25, 2006 8:38 pm

Hiya Gerry just found a post I did not 2 long ago that may interest you.
Type in search- diversional therapy on haemo you will find my post and also many others' too that may be of use to you.

good luck and best wishes Elaine :D
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Postby miss_scarlettuk » Wed Mar 08, 2006 4:17 pm

Hi, just joined the community today and thought it rude not to say hi :D

I'm 32 and from Kent, my real name's Tracy, not Scarlett unfortunately! Am 8 years (next month) out from a live related transplant from my mum (bless her heart) and have had some fantastic news from the hospital today. Basically, without wanting to bore the bits (I said bits!) off you, they said that if things carry on as they are I won't need to worry about possible dialysis/further transplants at least in this decade of my life. How cool is that?!

A little history if you've not lost the will to live? I've been in and out of hospital since I was 2, had my left kidney removed in 1978 when I was 4 and back and forth for treatment ever since. My remaining kidney finally admitted defeat in 1997 and I had the transplant around a year later from my wonderful mum. It's not been plain sailing and I suffered some severe rejection about a year after the transplant.

Feeling great now though, and would love to chat more and get to know you guys.

Take Care
Tracy x
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Postby SteveUK » Wed Mar 08, 2006 4:20 pm

Hi Tracy and welcome to KPG :D

I am also from Kent and have a live related kidney from my mum, but I haven't had kidney problems all my life.

I hope you enjoy posting here and if there are any answers you require, please shout up in the main forum. Everyone is really friendly and supportive here. :D

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