When do you know the right time for dialysis?

[skuch65]

I was wondering when do you know when it's time for dialysis?  I've seen people with different creatinine levels lower than mine and are already talking dialysis.  I'm sure it all depends on the person and how fast your kidneys are failing.  Does your GFR need to be less than 15 to start?  Right now my GFR is about 19/20.  My nephrologist has me on Diovan and Calcitriol.  He said my best option right now is to try and slow up the progression of my failing kidneys.  He told me that is what the Diovan is for. Thanks for any info that you can provide.

[Rerun]

Diovan is for Blood Pressure.

When you start puking your guts out and you can't walk up a flight of stairs you might want to check with your Nephrologist.  They usually start you on dialysis when your GFR hits 10.  Some start sooner some start later.  It depends on how well you handle the higher level of toxicity.

You may want to go get your arm checked for fistula placement.

Read all you can on this website.  There is a lot of this basic stuff covered.

[flip]

I actually started at about 15% which might have been too soon. The good side is that I had a good fistula and never had to use a catheter. I still have good kidney output so dialysis hasn't been too bad.

[okarol]

My daughter went from creatinine of 6.5 to 10 in about 10 days - the doctor thought she had a couple of months more to go - they should have had her get a fistula sooner, but he told us "think about what you'd like to do." WTF? She had no appetite, was throwing up, slept through her lunchtime in high school and was as thin as a rail. If I ever see that doctor again, I might punch him! So my advice is: Listen to your body - and listen to those around you who can see your decline. Good luck!

[spacezombie]

I agree with the other replies here. When you get to the point that you feel bad all of the time, I think it is time to start dialysis. I started kind of early on PD after my transplant failed because I knew it would rapidly make me feel better. And it did. A few months and some Epo shots later and I was back to my old self. So just listen to your body!

[devon]

For what it's worth, here's a brief on my situation.

I am pre-dialysis and have been since about 2003 when I was told to "start getting ready" for a transplant and dialysis.  My creatinine was about 3+ back then. Recently it went as high as 5.7 and 6.  I really don't have any pronounced signs of ESRD other than lethargy.  I spend my weekends resting for the week.  I try to get a full night's sleep every night so I can make it through the next day.  But, I believe the biggest help has been managing my high blood pressure so that my kidneys are able to function as well as possible in the best conditions I can create.  My doc said he wanted to get my BP so low that I would get a little dizzy upon standing.  Sometimes that's been the case; BP at 114/60! 

I recently got the A/V Fistula in my wrist and there was some question about whether there'd be enough time before it "matured" before I should start dialysis.  My creatinine was 5.5 before the surgery and my neph was doubtful.  After the surgery I saw him and it was 4.7.  He's more confident now that I will not need immediate dialysis and even adopted my hope that I can continue to push it off indefinitely.  So, I go for a monthly blood screen and do my best to push it off.  Maybe another couple years, eh?!  The last creatinine was 6.0 though but I still persist. 

I believe keeping the BP low as possible really helps me to postpone the inevitable dialysis and I'm sure I will know when it's time to start.  When I can no longer deal with the toxins in any other way and the symptoms get so bad I can't deal with them myself.


-Devon

[stauffenberg]

All the standard texts in nephrology say to begin dialysis when the patient's symptoms require it, not when the numbers suggest that most people would want to begin.  That is why some people can wait until their creatinine level goes up to 1000 (=10 on other systems) before starting, while other people begin at 600 (=6).  I had dialysis off and on for a while at the beginning, since it was not clear my renal function was going to fail, and I would be taken off dialysis every time my creatinine went down into the 300 (=3) range.

Dialysis itself only replaces 10 to 14% of normal renal function, so switching from low renal function to dialysis is not going to restore patients to feeling well.

[skuch65]

My doctor told me diovan was a blod pressure medicine.  But I guess it's used to help the kidneys to filter out whay ever is damaging my kidneys.  I can't remember what it is called.  I have never har high blood pressure.  I was on lisopril (spelling?) they made my creatinine skyrocket quickly.  With the diovan I've been more stable.  I get blood work every three months and go to nephrologist every six months.

[monrein]

I actually don't look like anything is wrong with me this time around. In fact people tell me I look great and blah blah blah. First time, I was very very pale and people noticed.  I was teaching at a University and even my students were concerned.  My boss asked me if I was working too hard.

Symptomatically, the first time, I was at death's door and I sort of fell between the cracks as I was teaching in another province but spending the summers here.  As soon as I got back here my neph put me on dialysis with a cath two days after he laid eyes on me.

This time,  I can look just fine, if I can manage to get out of bed, get dressed and go anywhere.  I don't go out if I can't get my act together but my husband and some very close friends know when I have that "dead kitten"look and feeling.  More and more days are becoming impossible to wring much quality out of and I don't ever want to feel as awful as I did the first time.  My doctor said he doesn't want me to wait till the last minute either because he's concerned about malnutrition and muscle wasting.

Diovan is a blood pressure med and kidney disease can cause your bp to rise which can cause further damage to the kidneys so you may be on it because your doc is concerned that will happen and he wants to prevent further damage.

[mallen]

I remember when I first became sick. It was the sickest I have ever felt in my life. They then put in a PD catheter, which took 2 months to heal. The night I went to my neph, he called the hospital across the street and they put a catheter in neck and I started hemo the next day. I have often told my neph that waiting was probably a good thing. I didn't know what it felt like with a creatinine of 20+. And without that knowledge, I would probably have blown off sever treatments. Thank God I don't have to worry about this anymore, I received a nice young kidney 14 months ago and it is a pleasure to have a creatinine of less than 1. (What I didn't need was the brain lymphoma.)