Kidney Patient Guide

Hi Colin,
The KPG website is a good starting point for background information, they publish some good books.

I find this other website very good: http://www.edren.org/pages/handbooks/un ... alysis.php they cover all aspects.

This forum is good for, 'practical' tips, information, and support.

Best wishes.

hi

i've been 'lurking' for some time now, and learnt a lot from the posts. thought it was time to contribute something too.

i crash landed into esrf at the age of 42. i went to the gp thinking i had a bad chest cold, as i was struggling to breathe, but my high bp got me sent straight to aau. a couple of days later i was learning the options for dialysis, choosing haemodialysis and getting a fistula fitted. the following week, the chest line went in, and i started dialysis. a few months later i got onto home dialysis, and have now been doing 5 times a week for just over two years. my mobile rarely leaves my side, as i await that elusive call for a transplant.

it took a bit of time to return to some kind of normal. i'm lucky to have a job which is flexible, so i'm back at fulltime work, and gradually increasing the amount of other things i do. this year, the plan is to give the garden proper attention.

Hi chessnut,
It sounds as though you bounced after the crash landing, that was good.

Five times a week, for how long each time?

Best wishes.

Five times a week, for how long each time?

2.5 hours a time, though sometimes I do longer after the day 'off' to remove fluid over a longer period.

Sounds good.

Hi all, im Dan.

I live in Cardiff but originally from London. I was born with Ureteropelvic junction obstructio, diagnosed when I was 5. I had PD for 6 months and had my first transplant when I was 9 years old. I'm now 31 and that transplant is failing (my gfr is 19). The doctors have said that the only thing that will improve my symptoms is a new transplant and have giving me info on living donors.

Hi Dan.

Welcome to the forum.
Good Luck with finding donors.
Any questions and someone here will have an answer so ask away.

Sue

Hi . I am carmel I live in New Zealand .
I had a kidney transplant 18 years ago. ( I was diagnosed at age 11 with an unknown kidney disease ).
I developed type 1 diabetes after my transplant. I feel really isolated in NZ and feel the drs have no answers. Anyway completely off topic. I had a baby 6 years ago and was told that I could not breast feed her due to the anti rejection drugs. And wold like to have an other baby but feel very discouraged by the drs . I joined this chat forum thingy to ask this burning question no one in New Zealand seems to know, " has any one breast fed their baby while on ani rejection steroids " ? Did it negatively affect your child ?
Thanks soo much for helping me in advance .
I am a creator of curiosities. Including native birds creatures dolls , bags garments etc.
x x

Hi Carmel,
Obviously the drug manufacturers have not done tests on humans but they could have done test with animals. Not breastfeeding would appear to be a sensible precaution, rather than risk blighting a child's life.

Best wishes.

Hi, new member here
My name is Tom, im 24 and have my left kidney has been deteriorating since the right one was removed age 5(ish). I go to the hospital every month or so for checkups and just recently had a fistula put in my left arm. I am on the paired match scheme and will hopefully be getting a kidney in august. My main concern is how to survive whilst going through the tests/surgery/recovery (financially). I work at an advertising company doing basic desk work admin but with the time off work becoming more frequent i find myself slipping deeper into my £100 overdraft. How does everybody else cope with the time off work/ being broke? I'm supposed to eat certain foods and take my pills but i suck at keeping to it. i often forget (forget/dont want to take) to take my pills (sodium Bicarb/alfa cal/calcium sulphate) for weeks at a time. i'm really struggling to keep my outlook positive.

Hi Tom,

Maybe post this on your own thread, as I'm not sure how many people check this 'welcome' thread.

I cut my coat according to my cloth. Towards the end, I was just working and sleeping, which proved to be quite good for my bank balance!

As for the tablets - if you're going to have a transplant you MUST come to terms with taking them accurately and regularly. If you don't, your new kidney will fail.

Getting renal failure is a big shock - I got diagnosed when I was about your age and had 10 years to get used to it. However, in order to lead as rich a life as you can (which, if you live with intention, will be richer than almost everybody else's despite your condition) you need to accept how your life is and move on.

Best of luck

Hi TacticalxTom,
Yes it is a shock to find yourself in this situation but others have successfully gone before you, read this forum, and these are but a few.

Give yourself 1 Hour, preferably alone, to, weep, wail, and contemplate, "why me?". After that, start to except life's cards as dealt and make the best play you can of your hand. Remember, life is not a rehearsal or a practice run we only get the one go at it.
Otherwise, forget the transplant.
Tibbs has said it all above, I agree with every word.

Hello All, Notso here from Australia. I jumped on an Australian kidney forum but it's like a ghost town. So I thought I'd drop in here and have a look.
I've just been diagnosed with Stage 4 CKD at the age of 51.I have been aware of the problem since the early nineties when I had an accident and it was discovered when I was in hospital.
I've just had the talk about dialysis and transplants so I am considering dialysis alternatives at this stage.
I live in Darwin, in the top end of Australia. Our transplants are done 2000 miles away in Adelaide so I have to find out about how that works.
FYI, have a look at this chap from my home town and what he gets up to while on dialysis.

https://www.youtube.com/watch?v=pLfsKlqzDRc

Notso,

Welcome. Hope you find some friends here.
What an inspiring YouTube clip of your townsman. Thanks for showing us that. It proves a point I like to make which is that life goes on even while on dialysis.

I'd be interested to know how they manage transplants where you are with such long distances. How long would it take you to get to your transplant centre if they said "come now". For me in the UK it was 40 minutes at 5am (90 minutes during the day).

All the best
Sue

Hi Sue and thanks for the g'day.

A direct flight from Darwin to Adelaide is 3hrs and 45 minutes although there are only a couple of flights a day mostly.

The Territory government pays for the fare as there is no facility in the Northern Territory to conduct transplants.

At this stage I don't know how long you have to get the best result from a cadaver transplant. I am back to the nephrologist tomorrow and shall ask him some more questions.

That chap from Darwin is an interesting fellow. He does home haemo at least 6 nights a weeks. Says it's a bit of a drag but says it has made a difference to his well being and his ability to have a very active life during the day.

I'm going to catch up with him as I had decided I'd probably go from CAPD but I too want to get the wring the most out of my life and enjoy it so I'll think again.

Cheers