I need to have a rant about fluid restriction, renal diet and Nurses!

[Sugarlump]

I have just got into a row with head nurse at Dialysis Unit.
I was over my dry weight at the weekend (it was hot, a bank holiday weekend and I have a social life...) so I was still 1.5kg over after Monday, and today
only able to reduce this by 0.6kg today, as my blood pressure quite low.
I asked to do an extra session this week to bring it back into line with my usual dry weight...

Well, off he went. You are drinking too much, you need to control your fluid and food better, and stop having ice on dialysis etc etc
I have measured my fluid intake and on non-dialysis days it is about 1400ml and my prescription has always been 1.5. But apparently (according to him
it should only be a litre a day) I have been on dialysis nearly ten years yet it's never been 1 litre!!!!
So then he says, there is water in a lot of foods. Stop eating rice or salad...

Excuse me, I can't eat high potassium foods/I can't eat high phosphate foods/I very rarely have soup which is my favourite/and NOW no salad or rice???
WHAT THE HECK can I eat then... What carbohydrate can I have ? Oh yeah bread, but it's full of salt...
I wanted to grab hold of him and shake him and say:
"Have you ever tried, existing on 1 litre a day, for one whole week (and have a life?) Have you ever tried living on a renal diet and shopped and cooked for it
and not been hungry or wistful or just plain pissed off? No well then don't even attempt to lecture me when I am doing the best I can! Arrrghhhh "

Help me. Make suggestions even but don't just tell me what I can't do, can't have, am doing wrong like you understand.
Because you DON'T!!!!

    

[cdwbrooklyn]

I know how you feel.  When I was in center my doctor use to tell me don’t eat this and don’t eat that.  It went in one ear and out the other because he said don’t eat it.  Now my dietitian for DaVita at Home is very different.  She does not tell me not to eat this and not to eat that she tells me how much to eat and how many times a week I can eat it.  She said she is not going to tell patients not to eat this and not to eat that because they will eat it anyway.  You can eat almost anything you want in moderation.  Your nurse is an idiot.  He should be quiet because he is not a dietitian.  Anyhoo, fruits do retain water but not enough.  Also, a 1.5 liters of water pre day is hard to do because your body is constantly dehydrated but it’s not impossible.  Chewing on ice is better than drinking water because it takes away your dehydration.  While rice is cooked in water, I don’t think it will make you gain water. 

When you get a chance, research the foods you like and see how much you can have per day and/or per week.   We have it hard enough and don’t need no one to remind us that we doing something wrong especially when he or she has no idea what we’re going through.

Keep your head up!!!   
 

[obsidianom]

Tell him Dr .O. says to take a long leap off a short pier and go for a LONG swim with the fishes.
Those idiots just dont know what its like dealing with all this. JERKS , all of them . Its time they tried to do what all of us do and see hoe it feels . MORONS!!!!
Just let it go in one ear and out the other. Or tell them you will file it where it belongs--------

[nursey66]

Yes , they seem to be real good at telling you what not to eat or drink  !!!  How about what you can have  ?  My hubby always gets these lists fron the Center of stuff to eat ,  but----  it's only stuff you can have 1/4 cup once or twice a week . That's like nothing !!!  What about the rest of the time  

[cattlekid]

I wrote once here about my thoughts on the training for a renal dietitian.

Here it is again:

Minimum three months on renal diet.  No cheating.  Bonus points if you do renal and diabetic at the same time.
No eating in restaurants.  All food must be purchased and cooked by the person doing the training.
Four weeks of this time must be during a holiday season (example, US Thanksgiving/Christmas - whatever holiday in your country is most food-centric).
You must block out the following time slots per week where no food purchase or preparation can be completed:
40 hours for work
15 hours for dialysis
56 hours for sleep
12-24 hours for dialysis recovery (assuming in center)


If you can complete this assignment, then and only then would you be able to be qualified to be a renal dietitian.

[jeannea]

Rice? He picks rice as a problem? And lettuce? Lettuce has a little water. Not that much. Rice does not count toward fluid. This person has NO idea about a dialysis diet. Idiot. 1.5 liters is more than some people get but it is NOT out of line with reality and is still really hard to stick to.

I agree holidays are hard. If they won't give you an extra slot, you'll just have to really be careful til your next session. I know it sucks beyond belief but it's for your health. Do more ice than liquid. Eat carefully. You know what to do.

Also, for the nurse: Yes, you know you got too much fluid but it was a holiday and your extra day off dialysis. You can't go back in time and change it. Is he going to help you now or just blather on?

[galvo]

Tell him to get stuffed!

[Sugarlump]

Thank you all for allowing me to rant, and your supportive comments validating how I feel.
It is so wonderful to know you understand, not theoretically but because my reality is your reality!
It helps 

[Dannyboy]

I have the same take as the rest here.....that guy doesn't know what he's talking about.

When I was in-center (for maybe 3 months at the start), I , too got all kinds of advice about fluid intake.....even when (as usual) my fluid gain was within "tolerance".   Most of them mean well,  but like cattlekid says:  "Live on our diet to get a better perspective."

Sheeeeeesh.

--Dan

[Speedy1wrc]

Around here we call it my dialysis TEAM. It sure doesn't sound like he wants to be any sort of team p!ayer.

Anyone who has been on dialysis for a decent amount of time gets to know their own body and what it can tolerate or not. For example my potassium is always low to normal so I can tolerate eating raisins which help me with cramping and the effects of the Renvela. Everyone is different and the dietician needs to know and accept this. A good dietician can work around the things you need to do and help with the things you can work with.

The nurse has NO place dictating anything to you. They should be doing only things to help you never to harm you.

I am at home so my fluid "restrictions" are less than someone in center. My dietician looks at my flow sheets and works with me to make sure I am getting the right amount of fluid whatever that may be. Right now that is averaging around 1.5L/day.

[PrimeTimer]

I'm surprised dialysis patients aren't told to wear a mask when showering, as to not breath in any steam (water droplets). I know, that was bad..

[Speedy1wrc]

OY!

[JW77]

Personally I'd like to slap the guy with a wet haddock.. Or maybe a bar of chocolate, or some tough plantain.. I digress.

There's a similar senior nurse at my unit that runs around like an angry mother hen, constantly chastising, and wanting everything done faster. I swear the guy is heading for an early grave!

I litre is bloody tough, 2 is managable, ish.

Personally I consider staff as part of my team. They work for me (there's a wake up call for em).  If I was his boss he'd be strung up by the short and curlies in an office fashion and no mistake!

[kitkatz]

Put a banana in your bag for dialysis days, when he complains about it, hand it to him. Also give him the orange int he bag.  Why? He is a froot loop!

[Sugarlump]

Least you all made my smile!!! 
The good news is he is leaving on 16th June to take up an admin based post 
but the bad news is, we don't know who is going to replace him!!! It could be worse (maybe) 

[estonb]

This post makes me so mad... Sugarlump, you have done nothing wrong! We are human beings, not robots! So what if you were a bit too far over you dry weight over a long weekend combined with a holiday? So what if you weren't able to take off all of the extra fluid because your bp dropped. Sh** happens! You even tried to rectify the situation by requesting to come in for an additional tx (which I doubt a lot of other patients would have done), and you still got bi*ched out.  In my opinion, that kind of treatment should not be tolerated. If it would have been me, I would have taken that either to the FA or the medical director.The fluid guidelines we are given are just that - guidelines. No one is perfect; all we can do is to try and follow them. And telling you to not eat rice and salad??? That one makes no sense to me.

You've been doing this for 10 years. I think by now, you know how to manage the ins and outs of these horrible diet and fluid restrictions we are told to follow.

[Lucinda]

I admire you guys over in the States so much because you are basically forced to go to a clinic whereas here in Australia we are encouraged to do dialysis at home even if we are flying solo.  After 10 years you know what you are doing and you should not be treated like a naughty child.  It amazes me how differently you are treated when you have a health problem. There is nothing wrong with your brain but health professionals treat you as if there is.  You don't have to put up with been treated unreasonably.  These people are providing a service and it should be with a smile not recriminations.  You know your body, you know what works best for you and just because you are not allowed to do it yourself, doesn't mean you can't be in control.

Just tell him what you are going to do and do it.  He is not the boss of you. 

[Speedy1wrc]

Lucinda our healthcare or lack thereof here in the States is driven by one thing...money. Policies and procedures are driven by profit. Centers are ranked by results, meeting goals can mean a lot when it comes to pay and bonuses. With Federal reimbursements dropping centers are edgy about making or as they claim losing money.

I find the same ignorance when it comes to diabetes. Most nurses are clueless. I don't know how many times I have been told to have a specific blood sugar reading. No not 110, it should be 105. Really? And how do we do that? One unit of insulin will lower by blood sugar by  between 40-60 points. How does one get accurate to 5 counts when you can't be that precise? Yet I hear it over and over. I need to lower my readings by 5 or 10 counts. Grr!

[PrimeTimer]

Lucinda our healthcare or lack thereof here in the States is driven by one thing...money. Policies and procedures are driven by profit. Centers are ranked by results, meeting goals can mean a lot when it comes to pay and bonuses. With Federal reimbursements dropping centers are edgy about making or as they claim losing money.

I find the same ignorance when it comes to diabetes. Most nurses are clueless. I don't know how many times I have been told to have a specific blood sugar reading. No not 110, it should be 105. Really? And how do we do that? One unit of insulin will lower by blood sugar by  between 40-60 points. How does one get accurate to 5 counts when you can't be that precise? Yet I hear it over and over. I need to lower my readings by 5 or 10 counts. Grr!

We all need to start carrying sticks!

[Sugarlump]

 
Definitely!!!
I am in the UK and "choice" over here is non existent.
You get allocated a center, not necessarily the most convenient, you get allocated a time again not for your benefit, and as for home dialysis, we have been trying for two years. Obstacle after obstacle.
We want an NX stage machine but that's like asking for the moon with our people. They are appearing in other parts of the UK now but everything is such a battle.

Sometimes, I feel like I could walk away from dialysis,with all the hassle you get... 
OK rant over

[Speedy1wrc]

There is actually a big push to go Home Hemo here. It's cheaper than in center. The concept and outcome is very good, however the implementation is severely lacking.

[cassandra]

We want an NX stage machine but that's like asking for the moon with our people. They are appearing in other parts of the UK now but everything is

Sugar, I just checked where Suffolk (that's where you live, right?) is in the UK    and as I now know that its next to Cambridgeshire, and Essex I would just ring the university hospitals there, ask for the dialysis units, and ask for Nxstage there.

They might want to train you, or offer to help you in your county to get it. You can also try than to ask your own Local Health Authority why you can't get it as the Health Department wants 15% D people on Home D.

Good luck, and that's how I started my 2 year 'getting Nxstage Project'

Love, Cas







Edited: Fixed quote tag error-kitkatz-Admin

[PrimeTimer]

[quote sugarlump
We want an NX stage machine but that's like asking for the moon with our people. They are appearing in other parts of the UK now but everything is

Sugar, I just checked where Suffolk (that's where you live, right?) is in the UK    and as I now know that its next to Cambridgeshire, and Essex I would just ring the university hospitals there, ask for the dialysis units, and ask for Nxstage there.

They might want to train you, or offer to help you in your county to get it. You can also try than to ask your own Local Health Authority why you can't get it as the Health Department wants 15% D people on Home D.

Good luck, and that's how I started my 2 year 'getting Nxstage Project'

Love, Cas

Wow. We are in the States and as much as we hate dialysis we are sure glad that we were offered the NxStage cycler/Home Hemo the day my husband was told he needed dialysis. Until his fistula was ready, he had to do incenter using a neck cath but within a couple months, we were being trained on the cycler using his fistula. Sounds like you are a strong person, Cas and that's a good thing for your fellow dialyzors. Keep up the good work! Hope the UK wakes up to the benefits of doing home hemo  -and quickly!







EDITED: Fixed quote tag error- kitkatz, Admin

[Pod99966]

I've been on Home Hemo after only two months of in-center. I've never really given it much thought, but it would make sense that a home hemo patient learns their personal limits better than someone who does in center. You personally have to look at all your numbers (BP, weight, ect...) 5-6 days a week. So you learn quickly that that extra drink you had made a big difference.

I got a bill in the mail, in center treatment was almost $4,000 per session. 

I do fondly think about in center... walk in, someone hooks you up, you watch TV or take a nap, they unhook you, you leave and come back in a couple days. But then, all my nurses were really nice, maybe because I was new and they didn't want to scare me off.

[kristina]

Definitely!!!
I am in the UK and "choice" over here is non existent.
You get allocated a center, not necessarily the most convenient, you get allocated a time again not for your benefit, and as for home dialysis, we have been trying for two years. Obstacle after obstacle.
We want an NX stage machine but that's like asking for the moon with our people. They are appearing in other parts of the UK now but everything is such a battle.

Sometimes, I feel like I could walk away from dialysis,with all the hassle you get... 
OK rant over

Sugarlump, have you asked your local health authority for assistance in this matter?
Do you know why your nephrologist does not help you to get an NXStage machine?
After all -  is NXStage not more cost-effective and better for your health in the long run?
Kristina.