I am tired

[KICKSTART]

Ken i do get what you are saying but would like to add some people present with UN-obvious fluid overload and are not educated enough to know the difference (not their fault its the doc's) I also agree what suits one doesnt suit all, after all im the worlds best advocate for that ! I cannot tolerate 4 hours of D , but do it i must. I usually just stop the fluid pull after three & a half. I have NEVER once been asked if i still pass fluid and i cant recall hearing anybody else get asked ! In fact Nursey Know-it-all was so busy lecturing another patient the other day on fluids , i nearly lost my rag with her (but didnt) She was telling her blah , blah , blah its not that difficult , its mind over matter , go suck ice cubes, its been -1 here brrrr . I wish she'd go suck ice cubes !

[The Lone IT from HM]

While she was doing her lecture, how many of the patients was she pumping Saline solution into…for whatever reason?  You know, that bag of salty water that makes you so thirsty that you have no mind, so it don't matter.  The nurses have no idea that they are the major cause of noncompliance patients…if you watch closely, you will see them do things to/for the patients that set the patients up to fail.

[KICKSTART]

Lone IT , the only people that get pumped full of saline are the ones that have reached the point of no return and crashed. Having said that , they also show no interest in learning about anything. One guy crashes regular and is by no means unintelligent and i have tried in the most basic of terms to tell him the warning signs but he is just not interested ..so what can you do?  They leave well alone with me now ..it wasnt without a fight i can assure you . But i got the measure of most of them pretty quickly and quickly realised i wasnt handing over the reins to anyone . I will even challenge my neph ! They are only people at the end of the day , this is our lives , not theirs !!! I am labelled as non- compliant , but i dont have to kiss ass because im not going for a transplant !

[Ken Shelmerdine]

Lone IT , the only people that get pumped full of saline are the ones that have reached the point of no return and crashed. Having said that , they also show no interest in learning about anything. One guy crashes regular and is by no means unintelligent and i have tried in the most basic of terms to tell him the warning signs but he is just not interested ..so what can you do?  They leave well alone with me now ..it wasnt without a fight i can assure you . But i got the measure of most of them pretty quickly and quickly realised i wasnt handing over the reins to anyone . I will even challenge my neph ! They are only people at the end of the day , this is our lives , not theirs !!! I am labelled as non- compliant , but i dont have to kiss ass because im not going for a transplant !

Well said KS! It's just a pity that there doesn't seem to be many patients who are educated about their renal condition. There is a lady at my clinic who like me has PKD. She drinks as much as she wants and appears as fit and well as I am.

She is always at or below her dry weight and yet they still take fluid off! Obviously I don't know fully her details but I've explained to her that there are processes for a more accurate indication of fluid measurement, but I may as well talk to the Great Wall of China.

[Hazmat35]

I too, have PKD and at times, I can Pee like a race horse.  Other days, it's like squeezing water out of a rock. 

My Nephs assistant told me just yesterday, that even though you have RENAL FAILURE, doesn't mean that it will prevent you from peeing.  Everyone is different, but dependent upon your individual condition, you might urinate normally, or not. 

I went in yesterday for Dialysis after the weekend and I was 3.3 KG over my dry weight.  THAT WAS WAY high for me for a 2 day weekend, but my dr., was fine with it.  Generally after 2 days off, I come in at 1.5 KG over my dry weight. 

[needlephobic]

Why does the medical profession routinely ignore this possibility?
Why is there this attitude that  kidney failure always means that without exception you must be unable to clear some or all fluid naturally

Why? because very few Doctors take enough time to look past the charts for each patient.  That is why, when I see a doctor, they spend more time answering my questions, than me answering theirs.  I am of the opinion that medicine runs on percentages instead of personal treatment.  "You appear to have this, so we will treat you this way."  Doesn't work for me.

I agree My neph doesn't listen to me at all goes in one ear out the other. Had a bad day today at dialysis they took 800 off when i told them no need to cause i will pee it out when i get home. Nurse told me it don't make any since to me we will take 800 and when you are almost done we will give you the 800 back if that is the case why take it off in the first place. Well I cramped and got dizzy bp dropped not i feel like crap my head hurts afraid to eat cause when i do i will feel like  and to top it all off come home feeling bad and was told my mom passed away this morning will the bad luck ever end?

[Lucinda]

So sorry to hear about the loss of your mum, Needlephobic.  I don't spend a lot of time here anymore as I am absolutely run off my feet with work but in relation to your fluid removal you need to put your foot down with your centre and stop them taking off more fluid than you need taken off.  I have been on dialysis two years now and still take off little or no fluid.  Initially they centre where I trained took off way too much fluid and I felt disgusting all the time.  Now I am at home doing my dialysis I take off little or no fluid and I feel terrific.  Take control.  It is your life, your body.  There are too many "Oops's" in the medical profession.  No one knows your body better than you do.  They go on generalities rather than individual patient history and while that might work for them, you are the one that has to endure the result of the mismanagement of your treatment.  I don't let anyone, including my neph who I think is terrific, tell me what to do if I am not comfortable with it.  If I make a mistake then so be it but I won't be another of their mistakes.  Tell THEM how much fluid you want to take off.  I say it every time I come on here.  I wish more of you guys could do your dialysis at home.  In Australia we don't need a partner to do dialysis at home but even when I went to the clinic I still put my foot down about how much fluid I took off.  I know how hard it can be though.  I went away on a holiday a few months back for a week and came home after the first dialysis session.  The nurse told me that she would not do my dialysis unless I took at least 1500 in fluid.  I told her I wouldn't do it and after 20 minutes of bickering I walked out and flew straight home.  If all else fails, get Kit's bat out

[KICKSTART]

Sorry to hear of your loss 

[Des]

(Sorry for your loss)

I have at least the fluid intake/removal down to a T. When I walk in they ask me what I want to take off... not the other way around. I have been right every single time. They add 500ml on for the rinsing but I checked the history on my machine and they put back only 220ml and I should know how much I drank and how much I urinated. I am the one doing it. 

I have to add that I have seen a decline in my urination since I started on D. The neph says that it happens to "most".... I don't like it at all.

D

[Ken Shelmerdine]

Needlephobic so sorry to hear about the loss of your mother.  As if you are not going through enough as it is.

[MooseMom]

This has been an awful year for losing moms.   I am so sorry.

I am so grateful for this thread!  The whole concept of fluid removal always has baffled me...how do they know how much to take off?  Answer, they don't KNOW...they GUESS.  This is an area where we really do need to be educated about our individual needs/condition.  I will be sure to do whatever it takes to preserve my natural peeing function while at the same time making sure there is no "hidden" fluid.  At my well-woman appt a few weeks ago with my gyn, she checked my heart and lungs and specifically told me that there was no fluid in those places, so I guess they CAN tell if there is fluid buildup instead of just guessing.

[Sax-O-Trix]

Needlephobic, I am sorry to hear about your Mom...