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 Billyflash » Tue Sep 27, 2005 11:14 am

Hello to all. I have just joined. My wife is the one having to endure haempodialysis(although I do try and sit with her as much as possible- she does two twilight and one early shift each week)

She contracted a kidney infection as a child and eventually her kidneys failed in 1996. She started on CAPD early 1997, but as she is quite small it never really worked for her. Continually in and out of the hospital with sickness and dehydration. In November 1998 she finally was strong enough to go on the list, and within two days(!!) a suitable match was found. The transplant only worked for a few weeksbut the local Renal unit tried for six months to save the kidney(most of which she spent in hospital) The one good thing to come out of it was that she started on HD and we haven't really looked back. We go away several times for long weekends every year(NYC,Prague, Paris, Dublin, Rome this year alone)

Thanks for reading all this waffle and I look forward to revisiting the site for information and maybe even contribute to other peoples questions, you never know.

One question I have is, my wife takes Rneagel with her meals. But no-one has been able to tell me
a) how soon after taking Renagel does it start to work?
b)how long does it work for?

She tends to take her tablets, eat her meal and then if she fancies a dessert(sometimes) she doesn't know if the tablets will still work or whether she needs to take some more, which then limits what she can have later

Any info would be gratefully received

Billyflash
Billyflash
 
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Postby Mike » Tue Sep 27, 2005 12:19 pm

Hi

Welcome to the board :D

Sounds like your wife's has a pretty rough time, hope she's gettting better.

I only take phosex so dont know the answer to your question but I'm sure someone here will.

Please feel free to ask any questions, we'll do our best to help you however we can.

Mike :D
Mike
 
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Location: Mansfield :o)

Postby Billyflash » Tue Sep 27, 2005 1:06 pm

Mike,

thanks for the welcome. We are only just along the road in Portsmouth. My wife used to take Phosex. How do you find it?

As for having a rough time, we have been through some 'fun' times but there is always somebody who is having it worse. Makes me feel bad when a young patient is on HD as they should be out there growing up, at least we had our fun before my wifes' condition worsened.

This is from someone of course looking in from the healthy side of life.

again thanks
Billyflash
 
Posts: 15
Joined: Tue Sep 27, 2005 11:01 am

Postby Epoman » Tue Sep 27, 2005 6:57 pm

Hello,

Just signed up. wanted to say hi. You can read my bio at:

http://ihatedialysis.com/forum/index.php?topic=25.0

I'm a veteran at dialysis been on for over 11 years. I recently started my own website for people to come rant and vent about the frustrations of dialysis. Plus get the hard truth about dialysis. Like our motto says "We are not being negative, we just hate dialysis." We do it to keep us alive but we still hate it.

We're a new site so check us out if you wish.

Thanks

Epoman
Epoman
 
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Re:Epoman

Postby Angel » Tue Sep 27, 2005 10:09 pm

Wow that looks like a really great site and have bookmarked it to read properly tomorrow.
It is so true what you say as no one can like dialysis. I mean how can anybody like feeling like this-so tired they could sleep anywhere but not able to sleep at night, itching, depression, aches and pains. I could go on but I won't lol.
Anyway from a few posts back you will see that I for now am on permanent dialysis so often need somewhere to go to vent about the politics of the unit or just the frustration of being 29 and tied to a machine in order to live.
Look for me over there soon. :)
Image
Angel
 
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Re:Epoman

Postby Epoman » Tue Sep 27, 2005 10:29 pm

Angel wrote:Wow that looks like a really great site and have bookmarked it to read properly tomorrow.
It is so true what you say as no one can like dialysis. I mean how can anybody like feeling like this-so tired they could sleep anywhere but not able to sleep at night, itching, depression, aches and pains. I could go on but I won't lol.
Anyway from a few posts back you will see that I for now am on permanent dialysis so often need somewhere to go to vent about the politics of the unit or just the frustration of being 29 and tied to a machine in order to live.
Look for me over there soon. :)


Great! I look forward to seeing you there. I have gotten alot of good responce with the site and many people have thanked me for doing it. It's our reality. For example a cancer patient does chemo well you know they hate it but they still do it because they have little choice. Well the same with us we do it because the only other choice is not to do dialysis and DIE!

My site is there so you can RANT and VENT or just let it all out. I will never edit your posts (just keep the foul language to a minimum) just because you are upset and you need somewhere to let it be known how upset you are. For example I noticed on Davitas forum I will see a post one minute then the next minute a moderator will delete it becasue it may contain language that would scare a new dialysis patient. Well that's what my site is all about hearing the TRUTH nothing sugar coated about it.

As you can see on my site I vent and rant alot. :wink:
Epoman
 
Posts: 7
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Postby Rik » Wed Sep 28, 2005 8:21 am

Hey they Epoman :D:D
glad to see you found your way here too ;)
I already enjoy your site and glad its going great
nice to see your experience here too :D
Rik
 
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Location: West London - UK

Postby Epoman » Thu Sep 29, 2005 1:09 am

Rik wrote:Hey they Epoman :D:D
glad to see you found your way here too ;)
I already enjoy your site and glad its going great
nice to see your experience here too :D


Yeap! thank you. :D
Epoman
 
Posts: 7
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Postby DonnaO and Harriet » Wed Nov 23, 2005 4:32 am

Hi folks! I've been scarce around here for the last year or so, but I've constantly thought of you all. I referred a woman to the board tonight because her husband had just had his second radical nephrectomy and will be going on dialysis shortly. Like most, she's going in 50 directions at once. When I read her email, I immediately thought of all of you.

If you'll remember, I came to this board after a hospital visit found a complex mass in my left kidney which turned out to be RCC. Everyone on this board was wonderful and welcoming to me - you'll never know how much of a difference that support made to me.

Since I was last here, I was diagnosed with thyroid cancer and had it removed, had suspected bladder cancer but turned out to be eosinophilic cystitis, but things are still under surveillance. The latest is that Harriet - do you remember Harriet? - has a "mass"/. However, at this point, it's too small to characterize.

In any event, I wanted to say HI! to everyone again - JMan, Rik, Cheryl, Rachel, and the rest. I hope to be around more often now that I've found my way back to the board!

DonnaO and Harriet
"I'm a man with a one track mind
So much to do in one life time (people do you hear me)
Not a man for compromise and where's and why's and living
lies"
DonnaO and Harriet
 
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Postby Rik » Wed Nov 23, 2005 9:56 am

Hey there Donna :D:D:D
what a wonderful blast from the past ... :D:D:D
Glad you and Harriet are still going leaps and bounds ... even with the wee hiccups along the way you have had ... :wink:
lets hope that Harriets mass stays as it is and not become any bigger Donna ...
I hope the Board can be of help to your friend ... but also to you too and I know you will be of help here on your return :D:D:D
I remember your wicked sense of humour!!!!!! :lol: :lol: :lol:
and look forward to more of your posts now you have found your way back ... :D:D:D
:0)
Rik
 
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Location: West London - UK

Postby metz66 » Tue Dec 06, 2005 5:34 pm

Hi all,

some of you may know me from one of the other boards (hi Stevie and Jules), I'm Paul and had a tx in March 2004 after nine months on CAPD/APD following 10 years of declining function as a result of nephritis.

Nice to find you all and hope to speak/meet with you soon

Px
metz66
 
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Location: Ascot UK

Postby fredjen » Thu Dec 08, 2005 11:01 am

Hi everyone

My name is Fred and I live in Walsall West Mids England and I am 39 years old. I am married and have a little girl aged 4 I have been on dialysis for only a week now using CAPD. I was diagnosed with ESFR about three years ago. Apparantly my kidneys have'nt grown in proportion with my body since a young age, and so now have given up but things are doing well and I'm quite happy with CAPD.
Well thats me in a short word I look forward to reading the Bulletin board each day so speek to ya soon. :wink:

Regards

Fred :lol:
fredjen
 
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Location: Walsall West Midlands

My name is Paul

Postby Hackeyfor1 » Sun Dec 18, 2005 9:56 pm

Hi, I am new to this board. I was going to the Brumley board but since it disappeared I needed a new place to get information and be connected. I have been on dialysis for almost a year (January 15 is my anniversary date). I am doing PD and I use the Fresenius cycler.
Hackeyfor1
 
Posts: 41
Joined: Sun Dec 18, 2005 9:53 pm

Postby Rik » Mon Dec 19, 2005 10:58 am

Hi and welcome to the Board here Hackeyfor1 :D:D:D
we are a really friendly place and hopefully you'll find its a real sense of community too :D:D:D
I'm from the UK and now just about 2 1/2 years post Tx but I was previously on HD as dialysis ...
hope are you settling into PD??
Rik
 
Posts: 1723
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Postby tommc » Thu Dec 22, 2005 1:44 pm

Im Tom in 26 live in Scotland (Centre of the universe). I was diagnosed with membronis (not spelt right or full name cause i cant remeber how to spell it) i was put straight on hemo as my numbers were sky high i am now on PD and doing well waitting to be called for a transplant working away. When i get a transplant my first order of buissness is to get a two liter bottle of anything and drink it just cause i can. Thats curently my goal in life

Tom :lol: 8)
tommc
 
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