How do you know when to start dialysis?

[vandie]

Hi,
My doc says 10-15% is the "magic" number.  Did you have any specific things happen to your bodies before dialysis, or did you all go by the numbers?  I am feeling increasingly more fatigued, achey, tired, no appetite.  But still hovering between 15 and 20% over the last 9 months.

ps......This website is fabulous!!

[Epoman]

Hi,
My doc says 10-15% is the "magic" number.  Did you have any specific things happen to your bodies before dialysis, or did you all go by the numbers?  I am feeling increasingly more fatigued, achey, tired, no appetite.  But still hovering between 15 and 20% over the last 9 months.

ps......This website is fabulous!!

http://ihatedialysis.com/forum/index.php?topic=1199.0

[Laura]

I am choosing to start dialysis (PD) now and my kidney function is about 17%.  I am doing this because I feel tired a lot of the time, my blood pressure is out of whack, and my skin itches so badly I leave bruises up and down my legs from scratching - and that is after using hydrocortizone cream on a daily basis. 

Plus, I am sort of a control freak.  So by starting dialysis now, I tell myself it is MY choice - not my doctor's or anyone else's. It helps me feel like I have some say so over what is happening to me.  But the good part about wanting to be so in control is also that I take my medication religiously, follow my diet almost all of the time (sometimes I take one bite of something I am not supposed to have, just to feel like I am still human), and get plenty of sleep. 

[RichardMEL]

I wasn't sure if I should post to this thread or the other one that Epo linked... I felt perhaps this topic was slightly more appropriate.

I was involved in a Trial study (my 3 years are now up) working out the "best" (or rather, better??) time to start dialysis. As in, is it better to start prior to say the 10% level, or later in terms of quality of life, health, and so on.

Luckily for me I was selected in the Late group and they (my doc) finally decided enough was enough when I was at 6% function. The interesting thing for me was that I didn't feel unusually worse than I did at 10%, 15% or 20%. Of course this is very individual and someone else may be in a bad way at 6%.

I wonder if I'll ever see the results of this trial as it could be interesting. The idea of course is to increase patients freedom (ie: stay off dialysis as long as possible) without affecting their health adversely. I was always told that if I felt sicker or something happened it would be straight on to dialysis but mine was all rather orderly.

I still feel pretty much the same on dialysis as I did before, with a few exceptions from time to time.

[charee]

I could start now if i want too. I have 9% But I my labs have been stable over the last few months so I am holding off as long as I can ,mainly for the reason that we have to travel to Sydney to do home training which is 500 or so KM from home and live there from 6 weeks to 3 months depending on how long we take to learn .So that means no work for hubby or myself and we have to find accommodation as well So the more time we have to save some money the better .I have monthly blood tests and as soon as they drop I'll be off  to learn. Enjoying my freedom while I can !

[angieskidney]

When I first had to go on dialysis this was back in Feb of 1990. Back then they went by what my Creatinine was. It was 600 when they put me on PD.

The hospital here was doing a study on the effects of starting dialysis "early" or "late". You had the option of signing up to the study, but you werent told if you were going to be an early or late starter. I said stuff that I was dialysis asap. So they got me onto PD asap, and it didnt make a bit of difference. I have never felt so sick in all my life as I was on PD. They told me starting PD early while I still had kidney function, would cause the kidneys to shut down quicker, as they didnt have to work as hard due to the dialysis taking their work load.

I have heard that a LOT.

[del]

Charee we had to travel 500+ km as well for traininmg.  Luckily we have really good friends there that we stayed with.  It was well worth it though to be able to do nocturnal hemo!!

[shay_pcb]

When I first had to go on dialysis this was back in Feb of 1990. Back then they went by what my Creatinine was. It was 600 when they put me on PD.

The hospital here was doing a study on the effects of starting dialysis "early" or "late". You had the option of signing up to the study, but you werent told if you were going to be an early or late starter. I said stuff that I was dialysis asap. So they got me onto PD asap, and it didnt make a bit of difference. I have never felt so sick in all my life as I was on PD. They told me starting PD early while I still had kidney function, would cause the kidneys to shut down quicker, as they didnt have to work as hard due to the dialysis taking their work load.

I have heard that a LOT.

I started dialysis with about 15% function, I think, and my kidney just kind of stayed where it was. I've been on dialysis for 8 months now, and they have done 2 of those 24 hour urine clearances on me and both times they said that my kidney does half the work and the dialysis does the other half. I heard that most people who start dialysis stop peeing after a year...I still pee A LOT!! lol And it's almost been a year, so that's not always true...

[angieskidney]

When I first had to go on dialysis this was back in Feb of 1990. Back then they went by what my Creatinine was. It was 600 when they put me on PD.

The hospital here was doing a study on the effects of starting dialysis "early" or "late". You had the option of signing up to the study, but you werent told if you were going to be an early or late starter. I said stuff that I was dialysis asap. So they got me onto PD asap, and it didnt make a bit of difference. I have never felt so sick in all my life as I was on PD. They told me starting PD early while I still had kidney function, would cause the kidneys to shut down quicker, as they didnt have to work as hard due to the dialysis taking their work load.

I have heard that a LOT.

I started dialysis with about 15% function, I think, and my kidney just kind of stayed where it was. I've been on dialysis for 8 months now, and they have done 2 of those 24 hour urine clearances on me and both times they said that my kidney does half the work and the dialysis does the other half. I heard that most people who start dialysis stop peeing after a year...I still pee A LOT!! lol And it's almost been a year, so that's not always true...

Actually, I still peed for the first 2 years on PD. I don't know if they did any studies to see if it is different with PD than HD but you WILL definately stop peeing eventually. It was nice while I was still peeing though because my drinks were not limited at all! Of course because I wasn't limited I was enjoying my favourite drink at the time which was Milk! I was soooooo bad with my diet that they told me I would end up in a wheelchair. Now things are different since I can't drink a lot. If I have milk I can't control myself (too tempting) so I don't have it in my apartment and now I am good with my diet lol! 

Anyway, sorry ... went off a little there ... off topic. Anyway, yes, you eventually stop peeing but I guess before you stop you actually end up peeing MORE. I think I have that right..

[shay_pcb]

Yeah I was told I would eventually stop peeing. I am limited though. I can only drink 4 bottles of water a day, I'm not allowed to have dairy products (unless I take extra renagel), and I'm supposed to eat lots of phospherous and protein bc I don't get enough. Anyway, enough about me. Let's get back to the topic!! lol

[angieskidney]

Yeah I was told I would eventually stop peeing. I am limited though. I can only drink 4 bottles of water a day, I'm not allowed to have dairy products (unless I take extra renagel), and I'm supposed to eat lots of phospherous and protein bc I don't get enough. Anyway, enough about me. Let's get back to the topic!! lol

Really?? Are you sure about that Phosphorus?

Oh and ya I am sorry.  So dialysis should start at 15% kidney function?

[shay_pcb]

Sorry...lol...I meant potassium!! I always get those mixed up, but I know which foods are the right ones. I just get the names mixed up!! lol THX!!

[Amanda From OZ]

Slightly off the topic again.... but it is not true "you WILL definitely stop peeing eventually", it depends what type of kidney disease you have. 

I started dialysis with about 10% function and i believe it was the right time, because i couldn't imagine lasting any longer with how i was feeling.

[shivashankerprasad]

genrally Diabetic patient start dialysis at 6 mg/dl creatinine value that is  at about  85% kidney damage .
Hypetensive and all other cases can begin at 90% kidney damage that is at 10 mg/dl creatinine value.
u need have to be seriously ill to start dialysis.
 start dialysis when u r still fit and fine.

[shay_pcb]

Slightly off the topic again.... but it is not true "you WILL definitely stop peeing eventually", it depends what type of kidney disease you have. 

I started dialysis with about 10% function and i believe it was the right time, because i couldn't imagine lasting any longer with how i was feeling.

I have one that it seems no one else has: renal dysplasia (I'm not sure how to spell it) and only born with one kidney to begin with.

[angieskidney]

Slightly off the topic again.... but it is not true "you WILL definitely stop peeing eventually", it depends what type of kidney disease you have. 

I started dialysis with about 10% function and i believe it was the right time, because i couldn't imagine lasting any longer with how i was feeling.

Oh okay, I wasn't aware! I learn sooo much on these boards! Thx! 

[jbeany]

I got my access placed when I hit 15% function, and started dialysis at around 9 or 10%.  My doctor actually wanted me to start sooner than I did, but I held off because I still felt fine.  i watched my labs each month, and when my BUN was over 85, I called to get into dialysis.  I wanted to start before I got too ill to cope.  I really don't think there is any particular number that indicates when you should start.  My doc says he likes everyone to start at 10%, but he has had patients at less than that who were still living busy, productive lives.  He'd had others who were miserable at more than 15%.  It depends on how you feel, not what the numbers say.

[RichardMEL]

I agree totally. I admit I was pretty surprised when the labs came back and I was at 6% and felt pretty good (well, relatively anyway). I mean I still felt tired and stuff, but no nausea or vomiting or any of the signs my doc told me to alert him to immediately. So I was not surprised when they said OK, you're starting Dialysis in 3 weeks... show up at 2pm.....

So I feel I did pretty well out of things (and my body) really....

[Joe Paul]

I didn't know what was going on....I thought I was loosing it. Things Ive done, places I been, before they told me I was sick, are a blur. Like I said, I didn't know I was sick, when they told me, it was sort of a relief. I didn't know it was time for me to be with tubes, hooked to a machine. You know what hurts? I told my Wife, if anything should happen to me, I did not want to be kept alive with a machine ( life support). So, here I am, with a means to survive. My Neph saved my life, and I didn't even know it was time.

[Laura]

It's a tough decision either way.  For those of you who started dialysis already (I'm getting my access for PD in Feb), did you feel better on dialysis...or did you feel worse?  Right now, some days I feel really good - almost normal.  Most days I feel tired and a little achey.  But some days I feel like I have the flu. 

[jbeany]

Laura, I felt worse than ever at first.  I felt okay before I started - like you, good days and bad days.  I don't really feel any different now - still good days and bad days.

[Laura]

Are you on PD or hemo?

[jbeany]

hemo

[boxman55]

I am not sure what my kidney function was at, when I had to start dialysis but, I do know I waited to long because I spent two whole days in bed throwing up then some how drove myself to the ER and spent the next 5 days in ICU hooked to the machine.  Boxman55

[Panda_9]

I think I started at 10% and it was purely my decision because I felt like total crap. If you are feeling ok then I would hold off as long as you can and enjoy the freedom of no dialysis. I felt no better after starting dialysis, and I infact got extremely worse. It wasnt until 12 or more months later that they realised it was my transplanted kidney making me sick!