dehydration: this is so frustrating!

[sullidog]

Ok,
As most of you know I don't retain fluid do to my urine output, in fact they have to give me flushes throughout treatment or else when I go home my bp gets low. Well sometimes techs for some reason don't feel the need to flush me if my bp isn't low, I talked to my neph about it and he said unfortunetly it happens no matter what center, if the patient's bp is ok tech's will not flush the person, well today I noticed the tech didn't flush me, so I went out lighter then usual because they didn't give me minimum back. Well when I got home my heart started racing and I went to stand up luckily I wasn't all the way up but I came down on all 4's. I checked my bp of course it was low. It's even in the computer to give me back fluid. No matter where I go to do dialysis I always run into this issue. This actually makes me wish the tech would dump a whole bag of fluid in me.
What should I do, I'm tired of constantly sounding like a broken record. How do I get these techs to understand that I don't retain fluid and that I do need my fluid back?
Any advice on this issue would be greatly appreciated as I'm at my wits end here.

[Bill Peckham]

Sullidog I assume you are controlling your sodium well, which is likely keeping your output up and allowing your body to keep it's fluid level about where it wants it, and all that is an excellent clinical outcome. The techs are snatching adequate from the jaws of optimal.

I think it makes a lot of sense to get the saline all at once after you were on and after they had established your very low UF goal. What UFR are they using? By insisting on the saline all at once, early in your run you would have time to educate any misguided staff.  What you wouldn't want is for the tech to figure the saline amount into the UFR.So the way it might work is whoever gets you on does what they always do and then at some point the floor nurse comes over and gives you the liter of saline per your doctor's standing order.

Another option, I don't recommend, would be to increase your sodium intake day to day. Increasing your sodium intake would likely decrease your output so you might feel better but that would be a hell of a way to get there.

Actually drinking 500 or 1,000ml should work. Keep a cool refreshing beverage available for right after treatment. Or drink it before/during but you wouldn't want the staff to increase your UFR to account for the drink so you may have to mislead staff, lie about your weight or sneak the drink. Those tactics would be corrosive over the long term so they're not the best solutions but being dehydrated is clinically risky for people using dialysis. I think it is much riskier than being over ideal hydration.

The best solution would be to insist on the sort of in-service training that would help the staff provide the right care for each individual. If you could get the unit to fix this problem, get them to fix the blind spot they have for treating people with output who none the less need to use dialysis that would be the best outcome. Because if you're having this problem it must mean that their overall understanding of the body's fluid dynamics is deficient. So they are probably making other dialyzors miserable in some other way. They need to have a better understanding of what it is they are doing. However, if they're unable to see and accept their deficiency, if really fixing the problem is not an option, and unfortunately that may be the case, then you have to fend for yourself. You need to drink fluid so you're not getting dehydrated. Being dehydrated makes you feel terrible and is clinically risky.

[sullidog]

Thanks bill!
I knew you'd have the good ideas!
Yes My sodium level is normal I think 132? I can't remember but it runs normal. This new clinic I go to actually does 24 hour urine so maybe once they do that on me that may also help them.
I will tell you that last time I was in the hospital they did mesure my urine and I did urinate 600 ml just in one trip, this was not measured over a 24 hour period though just once so that the hospital could get a sample for the labs.
I'm not sure what the minimum setting for the machine but I think it's .2000, some machines I've been on it's been anywhere from .400 to .900 but I will ask. Our center use Fresenius machines if that helps, not sure of the which ones though.
I will try your suggestions!

[aharris2]

Another option - when you step on that scale on the way out and notice that you are lighter than you should be, walk back over to the chair, sit down, and insist that they give you the fluid they were supposed to have put back during your session. It's a little annoying for you because I am sure you want to get out of there having already spent hours in the chair, but as you know, you will feel better.

[dialysisadvocate]

When my father was urinating, he would leave light sometimes, then they decided to not remove his  needle until he weighed so see what the weight was.. It is infuriating to hear that the doctor responded as he did, versus, educating the staff or intervening on your behalf.. after all, hmm, doctors are suppose to be advocates... well, not all the time.. they, too, hate to cause waves.
roberta
www.qualitysafepatientcare.com

of course if this continues with you, one must wonder if other patients are having the same problems. It is my belief that if one patient experiences something (negative outcome, poor care) generally, there are other patients experiencing the same. You can always file a complaint with the state (licensing and certification division). They will investigate and can hopefully correct the problem

[thegrammalady]

as much as i hate to say it....the squeaky wheel gets the grease.  just keep complaining and reminding the techs to give you fluid. they will eventually get it. maybe.

[sullidog]

Lol yeah I should do that, if I weigh lighter then I came in I should make them walk me to the chair and sit back down! they'll learn quickly as they will have to restick me and I'm not an easy one to stick do to scarring, if I do do that they can get by with just using one needle right? I could of went to the er that night but they would of just given me fluid, so I just drank a whole bottle of water.
Today they did it right.

[Ang]

Ok,
As most of you know I don't retain fluid do to my urine output, in fact they have to give me flushes throughout treatment or else when I go home my bp gets low. Well sometimes techs for some reason don't feel the need to flush me if my bp isn't low, I talked to my neph about it and he said unfortunetly it happens no matter what center, if the patient's bp is ok tech's will not flush the person, well today I noticed the tech didn't flush me, so I went out lighter then usual because they didn't give me minimum back. Well when I got home my heart started racing and I went to stand up luckily I wasn't all the way up but I came down on all 4's. I checked my bp of course it was low. It's even in the computer to give me back fluid. No matter where I go to do dialysis I always run into this issue. This actually makes me wish the tech would dump a whole bag of fluid in me.
What should I do, I'm tired of constantly sounding like a broken record. How do I get these techs to understand that I don't retain fluid and that I do need my fluid back?
Any advice on this issue would be greatly appreciated as I'm at my wits end here.

discuss this issue with your neph agrees with you, have write an order for x flushes during your treatment.
then the techa have to do it, plus if you make noises if they don't it should get done
good luck

[Whamo]

I have been on dialysis for four weeks, and I have had problems with dehydration.  First, I got cramps in my legs.  The next session it spread to my hands.  After I went from 2.7 to 2.5 in the next session I thought it was over.  I finished my session, went home, and then my stomach went through cartwheels.  I felt intense pain for about 15 minutes.  Finally, after a cup of water the pain went away.   From now on I take a bottle of water to every session.