New Member! (and yes ihatedialysis is a bit negative come on ;) )

[jontwindsor]

I've browsed these pages before and finally joined!

I'm Jon, 25, been on dialysis since summer 2010 and I'm a teacher (in the UK).

My physical health had been decreasing gradually so that I bearly noticed - until the symptoms accelerated - but even then I put it down to stress/getting old etc (in early 20s...).

Looking back the last 6 months before diagnosis were on the edge. I was on my PGCE - and anyone who's done 1 knows how tough they are. Every day on my drive into and from school I'd be falling asleep at the wheel. I didn't sleep at all at night for about 6 months. Couldn't walk to the shops without heart going mental. Had a really hard class on my placement and was wondering why I couldnt find the energy to eal with them - lack of sleep I thought - and lack of sleep from stress. Hmm. I could go on forever so I'll stop there on that front - but basically having seen 1 doctor in April and being told it was depression and I needed to exercise more - I was finally diagnosed with <5% kidney function in July 10.

Before all that I was very fit - and thanks to diagnosis I am not far away from how I was aged 16 - which is pretty amazing really. Obviously very hard to juggle haemo at the hospital with school - time is definitely an issue - but come on don't hate what's transforming your lives! Love Jon! 

[boswife]

Great intro and WOW!  what a road to the big D for sure.  Im sooooooooooooo glad you found out what was causing your downward trend, and are doing so well on dialysis     We (ok, im the wife of a D man) dont hate dialysis either, but surely would be nice to just be plain healthy instead,,,but, so glad that D does the trick for us so we have a life together.  We came home with NxStage (home hemo)  about 7 months ago, and thats even better    good to hear from you and be sure to share some of your stories.  It's always good to see the goods and the bads of it all..   

[Dannyboy]

Welcome Jon.   

---Dan

[monrein]

  to IHD

[jbeany]

 

Ahh, but that name grabbed your attention, now didn't it?  We aren't all negative - not by a long shot.  This is one of the biggest support groups for ESRD online - we've got over 6000 members.  Our founder started a sister website about all the things he loved about one of the new developments in HD - all about loving NxStage.  But he had days he hated ESRD and everything that came with it, so he chose that name for both the truth and the shock value of it.

So - when you get that crummy tech who can't find the right spot with that honkin' big needle, but CAN find every nerve ending in your arm...
or you really, really don't want to eat a "sensible, small amount" of some forbidden food that everyone at the table is raving over...
or you are craving a huge glass of cold ice water on a blistering hot day....
or you have to go to dialysis when all your friends are off to the event of the season...

Well, then it's hard not to hate those moments.

And if you come talk about those moments here, you have an audience who fully understand every bit of.  Knowing that is some times all that saves our members' sanity.

Stick around and you'll see it in action!

jbeany, Moderator

[gkcoley]

im 24 and been on dialysis 16 years, a few months is nothing, it gets worse over time, so, yeah...anyways, welcome! lol 

[edersham]

It's great you joined and more power to you that your doing well on dialysis. There are people here that have done well for a number of years and I hope you are one of them. But for most of us this site is perfectly named and it isn't about being negative, just brutally honest. We fight through the challenge and either find a mode of dialysis that works for us or seek a transplant and there is more to be learned on this site about those options and the benefits and risks than anywhere  else period. Good luck with whatever path you choose to fight this disease and I believe you will find more support and understanding here than anywhere. I know I have

Ed

[Rerun]

im 24 and been on dialysis 16 years, a few months is nothing, it gets worse over time, so, yeah...anyways, welcome! lol 

              Amen Brother

Jon, work as long as you can.   

Rerun, Moderator     

[looneytunes]

Hi Jon and welcome to our group!    

[Bren-tam]

  Nice to see another fellow UK member (not sure how many there are) I'm a newbie too and have found loads of great information and support and I've only been on for a few days. I must admit I find the website name hysterical - when I told my friends about it they were horrified but the sick humour in me loved it!!

[Poppylicious]

  Jon!

I was on my PGCE - and anyone who's done 1 knows how tough they are ... Had a really hard class on my placement ...

Oooh yes, very tough (I did mine in the fourth most deprived area of the UK).  Only one hard class?  Lucky bugger!  Thankfully I never had to juggle teaching and haemoD - my Blokey is the one on dialysis; I come here for support and the understanding of people who are going through the same thing.

[jontwindsor]

I did have a look for other dialysis forums, and yes bren-tam i was wondering if there was a decent UK 1 - nope! This is by far the biggest, with the most useful information, and now I've managed to join seems amazingly supportive too. So I suppose hating dialysis together is more positive than loving it on my own   


jbeany the reason i joined is all the fantastically helpful stuff i've found on those late night google searches - although we don't get the hot weather problem 

[Bajanne]

Welcome to our community, jontwindsor from one born under (Barbados) and living under (British Virgin Islands) the Union Jack! Glad that you have found the best place for information, support and encouragement, even if the title doesn't thrill you!   This website was a godsend to me when I was first diagnosed with ESRD and it continues to be one of my weapons in the fight against this renal challenge.  Inspite of the name there are loads of positive things here and we have become more than a website; we are a genuine family - caring and sharing.
Continue to read and to post, so we can know how you are doing.
Looking forward to hearing from you.




Bajanne, Moderator

[CebuShan]

     jontwindsor!

When I first heard of this site, the name made me laugh! I'm always looking for the things that can make me laugh because I hate to cry!! It is so great to hear that you are doing so well.   
I do hate dialysis even thoiugh I know that it is keeping me alive. I hate being cooped up in the Summer and I hate having to get out during the Winter. But I have my IHD family that is always there for me. Unlike my other family and friends, everyone here understands completely what I'm going through.
Please, come back often and keep us updated how you are doing!
   

[Jean]

  to IHD. Yes, at first, the name is a tad negative, but you could find no better place for support than this one. You have practically the whole world at your fingertips and a family to boot. Whenever you have any kind of a problem, this is the place to come. You will  enjoy IHD for sure.

[billybags]

Hi Jon, first of all welcome to the site, so glad you joined us. We live in Nottingham, not to far from you. Have you asked your unit if you can do your hemo at home. They are promoting this in Notts. My husband is on an overnight cycler. Did they give you a choice of PD or did you just opt for hemo?  What age group do you teach, I should imagine teaching is very tiring with out being on dialysis. Look forward to your posts.   

[Iwannabean]

  Welcome to the board Jon, from one newbie to another.

Iwannabean

[willowtreewren]

 

Hi, Jon!

What a story! Love your attitude!

Aleta

[natnnnat]

thanks to diagnosis I am not far away from how I was aged 16 - which is pretty amazing really. Obviously very hard to juggle haemo at the hospital with school - time is definitely an issue - but come on don't hate what's transforming your lives! Love Jon!

My husband gregory says his first dialysis (at age 19) was one of the best feelings he's had in his life, the change from the way he'd felt before to having "clean" blood.  Mind you, now that he's a transplant-guy, when he contemplates dialysis things get pretty hectic.  Touch wood he'll have one of those transplants that chug along for 40 years.
Good to see that you are going "well" on dialysis, and keeping your plans on track.  That's what its all about really, being able to get on with life.

[lmunchkin]

Great Intro!!  Welcome

lmunchkin

[Zach]

Glad to have you here!