when to do dialysis

[BRANDY]

When do you know when to start dialysis.?  Ive read that you dont want to get really sick, go do it before .  So what is the  signs I need to look for .?
  I got my fistula 3 wks ago and it is doing  great.  Neph told me it will be matured in 2 wks ..  My vein sticks up good.  I am doing ball exercises. 
  I am feeling neusea at  times, like a fog in my head  is the only way I can describe it,  I dont feel real great but could be worse.Im trying to eat better now.  I just dont want to wait to long , so maybe I wont be so sick after dialysis but on the other hand  I want to prolong it also. Just some thoughts  I have and sure others do to. can someone give a little input here.thanks

[Wallyz]

If you're nauseous, and getting foggy and disoriented, I would try to start as soon as the fistula is mature.  I would call your nephrologist and try to schedule your start date in 2-3 weeks.

[peleroja]

Couldn't have said it better, Wallyz!

[kristina]

What do you make of this, I wonder? I had my first kidney failure in 1971, was in a Coma for over 3 weeks, was being fed artificially and my kidneys picked up from 0% kidney function (whilst in Coma), first to 3%, then 5% and then after a few years they remained stable for 45% until now. Now I am in end-stage kidney failure again and I wonder if history repeats itself? The size of my kidneys has hardly changed, I eat and drink every day the same and weigh myself and my weight does not change. My kidneys work now only 9-12%, Potassium and Sodium are kept normal by my diet, the only signs are I am very weak. The question I am asking now, is: did the Coma give my kidneys a chance to recover whilst my whole body was kept quietly resting by the Coma? Does anyone know of other examples like this and how did it go the second time? Thank you from Kristina, schmidt56@yahoo.co.uk

[del]

kristina it sounds like you had acute kidney failure rather than chronic kidney failure at that time.  In acute kidney failure the kidneys usually start working again whereas chronic kidney failure they don't.

[Wenchie58]

Kristina,
  Del is correct, there are different forms of kidney failure.  I had "acute" kidney failure in 1975, they found out that it was caused by a medication...once the medication was stopped and out of my system the kidney began working again.
  Now in 2006/07 I am diagnosed with "chronic" kidney failure. No fixing that bad boy, just take care of them the best you can until either dialysis, transplant or both come around.

[BRANDY]

I am surprised that it woiuld be that soon. I feel tired all day , I didnt get my nap so im tired now  and fighting myself not to go to bed this early.  Dont  lab work decide when you need dialysis.Im really scared to do dialysis. Im a big baby I guess ,  I ve never been one but now Im acting like one. I know Ive got to do this sooner or later. I just want to wait till I have to . Before I get  really bad sick.  thanks for your input ..It helps me decide what I need to try to get  done,

[Lucinda]

Hey Brandy.

I started dialysis today and it is definitely not something you should worry too much about.  I guarantee that it won't be nearly as bad as you are imagining.  I feel fine this afternoon and I have been there all day. Definitely best to start when you are not feeling too bad. xx

[kristina]

Dear Wenchie, after my first kidney failure in 1971, the doctors waited until my kidneys recovered enough for the kidney biopsy in 1972. I was diagnosed with chronic proliferative Glomerulonephritis. Because the biopsy was complicated and made my kidneys bleed I was warned not to have another biopsy. It was only in 1995 and 2003 that I was diagnosed with Lupus (SLE/MCTD), Vasculitis, Antiphospholipid Syndrome etc. This first kidney failure was also most probably due to the chronic proliferative Glomerulonephrits. Kind regards from Kristina: schmidt56@yahoo.co.uk

[paul.karen]

brandy i saw my neph yesterday.
He told me that most of his patients tell him when it is time to start.
He can guide people but doesnt force them or give them a start date.  But if you have the symptoms
you are having i would say start.  dont wait till the dire end.  Will a month of being really tired before you start be worth it to you.  Once you start you should feel better (hopefully).
You can put it off all you like.  But the end result will be the same.  You need dialysis.  so why feel so bad?
I understand your scared.  But we all are :-)
your not alone.
P&K

[paddbear0000]

Am I strange for not having been scared to start dialysis?   

[Lucinda]

Am I strange for not having been scared to start dialysis?   

Nope Paddbear.  I wasn't scared either and the nurses at the dialysis centre thought it was a bit strange but I was fine.  Mind you, I have had a lot of exposure to dialysis through my family's history.  That probably makes a huge difference.

[paddbear0000]

The only exposure I ever had to dialysis before starting was through reading this site and a few books!

[Sunny]

Brandy, I'm scared to start dialysis too.
At least you have taken the step of getting a fistula. I have always said I will never give up hope on my own kidneys. It's been 8 years of fighting on my part, and now with kidney function at 15%, I am finally facing the fact it may be time to get a fistula. Now that you have your fistula, I think starting dialysis all depends on how you are feeling physically and when you feel like it's time. My nephrologist saysd a fistula can just sit and wait for as long as needed and there is no rush to start dialysis. But it's better to have the fistula than to be stuck with an emergency situation.

[iketchum]

I guess you need to decide how you want to dialyzes, not when. Most everyone has some trouble at first. My first fistula failed and had to have a cath put in until my new fistula was ready. My sister did peritoneal(?) and got allot of infections. My opinion is the fistula should be in the upper arm. I'm having much better results there. You can handle the treatment. use ladocaine and the needles do not hurt.

[Lucinda]

The only exposure I ever had to dialysis before starting was through reading this site and a few books!

Watch out then gorgeous because according to the social worker at my clinic, you "must be internalising" if you weren't scared to start!  I think she actually used the word "Petrified".  I think the enormous amount of support we get from here takes away petrification and we go into it knowing we have the whole IHD team behind us.  My attitude going into was that if everyone else here can do it, then so can I.  My first couple of days have been fine abet a couple of problems but nothing that couldn't be handled.  As I said in another post, I think time allocation is going to be the biggest obstacle to get use to.  Trust me, I guarantee the images you have in your head about the first day on dialysis make the actual event a real anti-climax.  The whole day passes as a bit of a blur and at the end of the day I am sure you will find you come out thinking that it wasn't nearly as bad or as traumatic as you expected.  They are definitely right about one thing.  Don't leave it too late to start.  Start while you are feeling fine.  I probably left it a bit long and now wondering why because the reality is not nearly as terrifying as the imagination.  Early days so I am not feeling any better yet, nor do I expect to for a few weeks but it is actually comforting to know now that the feeling of well being is now in process!     

[paddbear0000]

Wow. Your SW sounds like a real whack job! I can guarantee I wasn't "internalizing" anything because not once  have I had an anxiety attack. And i always have anxiety attacks before going to or starting anything new that is medical related.    That's for your SW! 

Part of the reason I haven't had a problem with it may be because I've been a type 1 diabetic almost my entire life and have grown up on needles, blood and doctors.

[consumerx]

im in position im very paranoid and very organized, often i have the times laid out for the day everyday, 5x a day everyday. everyday its the same thing hook up and drain and insert over and over. soon the machine thing will happen but i hate those things i love just to sleep, but oh well..the next day the schedule resumes..

[BRANDY]

  Lucienda---You sound like a lady that has it together, great that makes it easier Im sure.  What % was you when you finally started.

I think it will depend on my next two blood works  I have   two weeks apart that willl make up my final decision.I see my neph April 25th I believe. I can surely make it till then. Good luck on your dialysis.

[RichardMEL]

Lucinda does have it together - she's amazing! And behind the wheel of that hummer.. oh baby!!

But seriously Brandy - your life is NOT a number on a lab result. Reading between the lines of a couple of your posts it sounds like your big concern is that your quality of life is being eroded because you're constantly tired, and have patches of feeling foggy and unwell. If you ask me (and you sort of did Even though I already posted here) it is time. I know you're scared but the issue now really is your quality of life as far as I can tell. Chances are good that starting dialysis in a month or two you would feel much better without fog or nausea and hopefully a bit more energy to get on with things and live life rather than exist between naps and feeling horrid.

Yes, I know it is scary to start. I wasn't quite not scared like superLucinda but I was more curious and even a bit resigned to it I think when it came - because I had been building up for 13 years. Everyone is different though! There's no shame in being scared - it's a massive change to your life BUT it will be a positive one in terms that it should stabalise you and allow you to live a better quality of life. You might find that the reality is actually easier to deal with than you imagined (I think Lucinda might agree with that at this point - though I am not wanting to put words in her lovely mouth).

As someone else said often the patients tell the neph when to start. I was always advised that as soon as I started to feel regular nausea, throwing up, feeling horrible etc... it was time. Now that never happened to me - I got to GFR 6 and all I really felt was tired more than anything - but like I said.. your life, and quality of life, is not just a set of lab results and you shouldn't be dictacted by those numbers... it's also about how you feel. I understand wanting to put it off.. but perhaps that time has passed because clearly you are starting to feel physically worse.. chances are it won't get better without the aid of dialysis. Starting sooner than later might well save you from some of the worse symptoms of ESRD.

All my opinion of course.

I hope whatever decision you make that it goes well for you.. and of course we're all here for you!