Can you start dialysis if you don't have excess fluid?

[paddbear0000]

Can you actually start dialysis if you don't have any fluid swelling? My symptoms are getting worse, but I haven't had any swelling yet. I'm not quite ready for dialysis, as I can handle the symptoms so far, except for the nausea and vomiting. The nausea is mild and not constant, and the vomiting is fairly infrequent. But if it keeps getting worse, I will want to start.

[G-Ma]

I didn't have the extra fluid but I had too many toxins in my blood so started D.

[Rerun]

The UF (Ultra Filtration) is the negative pressure on the fibers that pulls fluid.  They would just not have that on or a minimal amount.  If my blood pressure gets too low they just shut off the UF and it still cleans the blood but does not pull fluid.

                                                                                         

[paddbear0000]

I could actually use some BP lowering! It is very high and hard to control lately.

[Chris]

From post nursewratchet has made in explaining things, you can go on dialysis without having fluids being pulled off as rerun has said with the UF. I'm sure nursewratchet will reply later on to give input also.

[Joe Paul]

I started due to the build up of toxins as well. It took about a year before some swelling caught up with me.

[jbeany]

I didn't have that much fluid on when I started either.  It's not unusual to have kidney function that still clears fluid from your body, even if it's not doing the job of clearing toxins.  If I remember correctly, okarol said Jenna never needed fluid removed, and never had to have fluid restrictions.

[RichardMEL]

yep if your fluids aren't an issue you can start with no fluid restrictions (I am so envious of those people!!! LOL) and they just clean the blood without taking any off that is fine.. if your toxin levels are too high then you will need that anyway. You may find that starting dialysis will affect your rate of passing (as in slowing or eventually stopping it) which will then obviously mean fluids will start building up, but you don't need that to start dialysis.

[paddbear0000]

Thanks for all the replies! I've been getting nervous that they wouldn't let me start when the time comes. Did those of you who didn't have fluid seem to have an easier time with starting dialysis than if you had had a lot of fluid build up? I know all that fluid causes a lot of problems, especially on the heart. I'm not feeling too bad yet. I have good days and bad, with the bad being tolerable with mild meds. But I'm thinking I might start earlier than later with the dialysis so it's not such a shock to my body. Is that a good idea? I don't have my fistula yet, but I'm calling my neph's office tomorrow to set up an appointment to talk with him about it. I figure that by the time it matures, I should be in a position to start. The doctor I'm meeting with next week about possible gall bladder surgery, is also a vascular surgeon who does fistulas, so I actually have a doctor all lined up! I'm that much further ahead anyway!

[monrein]

My neph doesn't believe in waiting to start until you're so sick that you're more like a half dead kitten than a human.  Fluid removal is only one of the things that dialysis does, creatinine, BUN and other electrolyte removal like potassium and salt are equally crucial.  I didn't pull much fluid at first because I was still peeing.  Some fluid was hiding however even though I didn't feel puffy either.  After two months of D I was off all my BP meds (all 5 of them, some at near maximum doses).  I also felt so much better.  I had to have a permacath put in because I couldn't wait till my fistula matured. 

[paddbear0000]

It's odd though, my potassium and salt levels are fine. I guess it's because I eat very little. And the only salt I get is in processed foods, which again, I'm not eating much of. I've also stayed away from a good bit of processed foods, especially ones that are loaded with sodium, like pasta, rice and dinner mixes because of my blood pressure. I'd hate to see what my levels were if I was eating a normal diet.

[RichardMEL]

It is true that I feel it is better to start dialysis when you feel relatively healthy (you all know what I mean by that) because you will be better able to handle the initial stress on your body of the changes dialysis brings. If you already are at the point where you feel lousy, throwing up all the time, sick etc it will be that much harder as you will be battling on more fronts. I think it would also ease the transition into dialysis. I'm lucky I started with a eGFR of 6, but I felt relatively OK (just tired lots) and I'm ever greatful they didn't push it further waiting for me to really start feeling/showing the more severe effects. Some people who get acute ESRD of course don't get that choice I and I so feel for those folks.

[cris]

Monrein touched on a very good point about the fluids hiding in some places. I have been thinking about these for sometime and have been quite edgy about Nanay's pulling off fluid. Please let me relate our experienced, during the first months of Nanay's dialysis, she was not puffy, nor have any visible swelling. The center neph said she does not have fluids at all, later she was confined due to complications on her liver, lungs and her blood became sepsis. It was only then that the nephrologist at the Kidney Institute explained to us that all these complications are brought about by fluid overload...... meaty fluids, fluids hiding in crevices, which are not visible to human eyes, lab test and these are the killer, toxic fluids. The neph further stressed that only the patient herself can really say if she has these fluid based on what she feels and extensive blood culture test, which are not normally done in centers. For Nanay, the hiding fluids got manifested only when her liver started to show soaking. No one would ever thought that she had excess fluids because she was skin and bones that time!

Fortunately, this has also something to do with knowing your true dry weight. On my earlier post, I said I was worried about Nanay constantly losing weight from 51 kilos to 41 to 33 kilos now, which is her true dry weight now. After 16 months of dialysis, it is only now that Nanay is really getting back to life, after all the things we went through. The hep C is gone, all her blood work are normal.

Be careful of hiding meaty fluids!!!

[RightSide]

I didn't have excess fluid when I started dialysis--and I still don't.  I still urinate quite a bit, and I eat a very low sodium diet.  My ankles are never swollen from excess fluid.

I started dialysis to try to cleanse my body of the toxins that were building up; and to facilitate the balancing of my blood chemistry, electrolytes, pH and so forth.  And that's what I still need it for.

[paddbear0000]

Richard, do you guys use a different measurement of GFR, like you do for creatinine values? If you do, do you know what the US equivalent would be of your 6?

[okarol]

Jenna was still able to urinate so she never did have excess fluid. We always had to fight to keep her dry weight close to what she actually weighed because they would try taking off fluid unnecessarily, causing her to feel really bad. Dialysis for her was started because she was sleeping all the time, couldn't keep food down and her creatinine went from 6 to 10 in 3 days.

[paddbear0000]

My creatinine has been fluctuauting in the 3's (the last bloodwork I had done was a month ago though). I feel a little weird and perhaps guilty, about thinking I need to start dialysis soon. I've had people (not on IHD tho) tell me that my creat isn't bad enough to need dialysis yet. I'm not nauseous and vomiting constantly (it comes and goes), so I've been feeling very conflicted about this my decision.

[paris]

Paddbear, you and your doctors will know when the time is right.  My numbers are similar to yours and I am not on dialysis.  I have actually been at the same numbers for a year.  Although I have more symptoms, we are working together as a team and he (my neph) tells me he will not let me get in an emergency situation.  But, I am appreciating the fact that I am not on dialysis yet and do what ever I can to prolonge the inevitable. I use to think "this is it" everyday.  Now I don't think about it much at all.   So, talk with your doctor and see what his view is.   Hope you get some answers.   

[Lucinda]

Well paddbear, I am the disaster waiting to happen.  I was told two years ago I should probably start dialysis and I had my graft placed and as far as I  am concerned I have had two extra years of freedom.  That said, I am absolutely fanatical now about diet and exercise.  I keep a really close eye on my blood pressure and I have found that exercise is particularly beneficial at keeping mine in check....of course the meds help as well.  My creatinine is all over the place.  One month in the 3's next month in the 7's and then back to the 5's the following month and the cycle goes on.  My neph is happy to go month to month and so am I.  I don't have many symptoms at all.  I do get he nausea but I have that controlled with medication and anemia is under control.  I go to bed early but while I am still able to exercise and go to the gym and do pretty much what I would do normally, then I will continue to postpone the inevitable.  My neph is terrific and I am sure she will not let me take too big a risk. 

[lola]

Otto started because of toxins, not fluid

[BRANDY]

What about the major cramps, wont you have them if not enough fluid .  And how do they know how much to pull off  /. I have MAJOR cramps in am  a couple times a week. Was told to have plenty o fluids  but on the other hand  dont drink to  much.  ugh like what does that mean  I been having cramps for several years.For years drs have listened to me complain about t them and no reply to the problem.  It worries me and makes me angry also that they dont address the problem  I have just lived with them  sometimes they may last 5 to 8 min  befor they are gone you are begging  god to just let them pass. Its that bad

[kellyt]

My nephrologist was the same as Monrein's.  He didn't want to start me too early, but was watching me closely because he didn't want to wait until I was sick.  Fortunately, I never got sick (nausea, loss of appetite, headaches, etc.).  I only suffered with fatigue and muscle weakness.  That's why I was able to stay off dialysis until transplant.   My phos and potassium levels ran in the high normal range to barely over normal range.  My BUN did go up in the end, but he removed some meds and that came down a little.


What is your nephrologist waiting for, Padd?  I mean, if you're feeling sick all the time, can't eat, etc.  I always wondered if I would just wake up one day and start throwing up and stuff.  I never felt nauseated.  I lost my appetite for a month or two after I got my fistula placed and I thought "this is it".  But it came back and everything went back to "normal".

[paddbear0000]

My neph isn't really waiting now that my last labs showed I had dropped to 95 (creat was 5.5). The last time I posted, my creat was 3.2 and I think my function was 17% if I remember correctly. I already have my fistula surgery scheduled for this Friday, and depending on what my local neph says today, I may also have a catheter put in during the surgery as well. Today is the first time I will be seeing the local neph. My regular neph wants me to establish with him for when i start dialysis. The other one is an hour away and he doesn't want me to have to drive an hour 3 times a eek to dialyze.

[kellyt]

That sounds good.  I can't remember what my GFR was when I got my fistula.  I think it was at 10.  My creatining was in the 4's.  In August of 2008 it shot up to 8.something and he dropped two of my meds and it went down a little into the high 7's one week later.  He decided to wait on dialysis to see if it came down further.  It did and it went into the 6's over the next 6 weeks.  When I admitted for transplant on Nov. 4th my creatinine was 5.1 and my GFR was holding at 7, so I was VERY happy my nephrologist didn't jump the gun and put me on dialysis. Although I think I would have been on dialysis by Christmas had I not gotten the transplant.  He had been holding a bed/chair for me at the downtown clinic since March!  I think it was more so of the fact that I still felt pretty good.  He was shocked to hear to mowed our lawn like twice that summer (push mower).  He didn't think I'd have the energy, but I kept up for the most part and, again, never got "sick".

Good luck with your surgery on Friday.  Mine went smoothly and I had minimal pain.   

[Ken Shelmerdine]

Richard, do you guys use a different measurement of GFR, like you do for creatinine values? If you do, do you know what the US equivalent would be of your 6?

Paddbear, GFR is a percentage valuation of the of toxin removal. Therefore a figure of 6 would mean 6% kidney function in the area of toxin removal.
What I find misleading is that meds refer to this figure as if it is a percentage of overall kidney fuction which it most definately is not. For example you could have 6% GFR and have full urine output and a normal haemoglobin level.

Also from my personal experience kidneys that are still producing full urine output also filter excess potassium adequately. During my build up to dialysis as  things like creatinine and urea increased my potassium levels remained within the normal range and still are even though I don't avoid poassium rich foods.