fluids, and frustration

[gothiclovemonkey]

I dont understand why I cant have the self controll over my fluid intake. I feel like I do wonderfully, I feel so thirsty because of the lack of fluid, how can I possibly be over doing it?? 10 KILOS from my dry weight!!!??!?!
I really wonder if I am sleep drinking... I am so dang confused. I avoid salt as much as I can. I know processed foods are salty but sheesh

I am also frustrated that my doctor wont allow me to try PD again, I really do believe that would help me so much, but I cant convince him otherwise.

Im really upset that I have all this fluid on me and nothing is helping. I cant seem to keep of the wet weight! I have way more than 10 kilos but my doctor thinks im just gaining weight... who knows...

[cassandra]

how much do you gain in between sessions?

[gothiclovemonkey]

TEN KILOS! here lately is seems anyway!

Would it be totally unsafe for me to drink absolutely nothing between treatments>

[cassandra]

If you are thirsty all the time, and gain ten kilos, than you would probably faint or something. Do you use small cups (like 100 mills, or 50 mills (double espresso size)? Maybe have a half litre bottle with your favourit cold drink in the fridge for use in 1 day, and than you can drink 4 coffee-cups of coffee or tea or milk or whatever as well in that day. How much can you take off in one session?

[gothiclovemonkey]

i usually take off 5 kilos per session

Thats just it, I have maybe 2 or 3 cups of coffee and one cup of water for meds a day, and thats it, usually. Now i will say on fridays, when i have date night, i am a lil more lax and ill have a pop with dinner, sometimes a water too depending on what we eat... but the rest of the time i only have the coffee and one water for meds!

[Restorer]

How big is "a cup" of coffee or "a cup" of water? Can you measure the cups you're using? Do you have smaller cups?

I tend to drink 1 mug of coffee in the morning (6-8 oz), 1 small glass of water a couple hours later (about 8 oz), a can of soda or another glass of water (12 oz or 8 oz), and then 1 or 2 more small glasses of water at night (2 x 8 oz).

If you think you're sleep-drinking, maybe you can set things up to find that out. Weigh yourself just before you go to sleep and just after you wake up. If there's a big increase, that might be your problem.

Alternatively, take note of the liquid level in all the things you could be drinking (filtered water jug, juice bottles, whatever you have; and number of soda cans, water bottles, etc.) and smear something on the handles of all the faucets so you can see if it's smudged in the morning - or see if it's on your hands.

Are you gaining more and more between each session? 10 kilos between sessions is a HUGE amount, but it sounds like that's where you are above your dry weight, and you're actually only gaining 5 kilos each time, which sounds reasonable for someone who doesn't restrict drinking at all. It's a mystery.

[RichardMEL]

heavens. 10kg is a massive amount. Is the calculation correct?? Were you comparing weights, or the staff?

My only suggestion apart from the other comments here is to take your weight at home on scales at a regular basis, a few times a day, when you go to sleep, when you wake up etc and keep a chart. It does not matter if the scale doesn't match the unit's one but to keep track of what the scales say your CHANGE is, so when you get off D weigh at home ASAP, note it down, then a new weight etc, and take a table to see your changes. Also take your "home weight" prior to going to D and weighing there - compare the charted change with what D thinks your change is. It may give some clues.

Also if you track your changes like this, you may identify more closely sources of weight gain. eg if you put on a lot between sleep and wake that's a good clue. Or, after dinner, or after your coffee (also remember coffee will atually dehydrate, and also don't forget that coffee contains K). I always limited coffee to one a day max while on D. Water is much better (but boring) to drink.

just a few thoughts.

[billybags]

Goth, have you tried chewing gum. My husband is always thirsty and he says chewing gums helps or ice cubes instead of a drink but then you have to be careful about dehydration/.

[gothiclovemonkey]

Its a standard coffee cup, i think 8oz...
I didnt know coffee had K in it, my dietician never mentioned that to me, and Ive talked to her about my fluid, mentioned that all I dirink is coffee and water, the occational pop.
Im definitely going to get a scale and try these suggestions, thank you!

I admit I havent ever really followed any type of regimine really... I mean, I avoid the high K and stuff like that, but for the longest time I still urinated, so the fluid wasnt a huge deal. But I have noticed lately that I am not going hardly at all on most days, so that could be a big part of this...

The problem with water, I can gulp a huge glass and not be satisfied, which is why i chose coffee because I sip it, same with pop, i cant gulp it down! I have limited self control when it comes to water... but im going to try getting the shot glass idea...
Ive even tried just getting a 24 oz bottle and only letting myself have that for all day and one cup of coffee in the morning maybe ill try that again.

With the exception of the last week in march, I think I might have to limit our date night, because that may also be part of my problem.

Ive been on d for 5 yeas, but until recently i havent really struggled as much. Then again, it *might* be that im actually trying to be compliant, where as 3 years ago I just didnt care at all...

I had been sucking jolly ranchers like crazy too, but my doctor seems to think thats a terrible idea...so ive stopped that. It helped me with my thirst, I tried sugar free but they make me thirsty and they do not last nearly as long as the jolly rancher. And I do chew gum, but id slowed down on that as well because i was making my inside of my mouth raw from biting myself LOL im smooth.

Ill figure this out, I just need to really pay more attention to what im eating, i think its what im eating rather than what im drinking... maybe... idk!

[Restorer]

Or, after dinner, or after your coffee (also remember coffee will atually dehydrate, and also don't forget that coffee contains K). I always limited coffee to one a day max while on D. Water is much better (but boring) to drink.

Coffee doesn't dehydrate.

The caffeine in coffee will make a healthy person urinate more, but it won't cancel out the amount of fluid in the coffee. It won't dehydrate someone who doesn't pee. If it did, I'd be drinking coffee all the time!

[RichardMEL]

Coffee doesn't dehydrate.

The caffeine in coffee will make a healthy person urinate more, but it won't cancel out the amount of fluid in the coffee. It won't dehydrate someone who doesn't pee. If it did, I'd be drinking coffee all the time!

mea culpa. you're right - I meant diuretic....

and so it sounds like yeah drink coffee and pea. I tried the same thing with green tea - I think the caffeine is a real issue though.

[gothiclovemonkey]

would it be totally unsafe for me to not have anything for a a few days? No drinks no foods between treatments? I mean, i know its not the healthiest idea, but if i had maybe a protien bar and absolutely nothing else, would that be ok? or dangerous?

[Whamo]

Wow, I just got off dialysis, and thought I was bad.  The nurse was going to take off 4.4 that I put on during the weekend.  I got to 3.7 before I started to cramp.  I've been steadily gaining weight for a month now.  I've been walking three miles a day trying to burn it off, but I guess I'll just have to cut back on the calories.

[Riverwhispering]

Hey i'm not even on dialysis yet and don't have to watch my fluids but.............

NO one has mentioned the food thing.  Lots of foods from what i'm learning are considered fluids even rice from what I heard on the Facebook IHD

Just my 2 cents

[gothiclovemonkey]

isnt that insane! rice... i mean, its common sense really but its not something that you would think!
and what cracks me up, the other day I had ONE cup of coffee, and thats it between treatments, and we had homemade noodles, absolutely no salt, I didnt know how in the heck i gained nearly 2 kilos between treatments, but now i think i know! The noodles ... how silly!

[Riverwhispering]

I really know nothing about this... it's only what I've been getting from people posting but...........  Originally I understood it was only things that turned liquid at room temp that is considered fluids.    On the Facebook page I've read both that rice is and isn't considered liquid LOL 

I guess I'll find out soon 

[Restorer]

I guess I've incorporated food into my "fluid" weight accounting. I think about it more in terms of gaining weight (not the usual definition of "gaining weight" = "putting on fat", but just taking in anything that adds to your total weight). Anything you swallow is in your system, so if you eat a pound of food, you've just gained a pound, and that won't come out until you poop it out.

And poop doesn't even carry much water, usually. If you eat a cup of rice, that's 100 ml of water. The same for a cup of cauliflower. It can add up over 2 or 3 days.

You're not constipated, are you? That could mean you're absorbing more water from your food, and holding onto more food-weight.

[gothiclovemonkey]

I always thought that myself, that food weight may also be an issue... but no im not constipated. usually quite the opposite LOL

[Gerald Lively]

Any liquid counts.  Ten kilos is monstorous.  You should be carking.

Rules:

1.    Be honest with yourself.  Then get a dependable scale and weigh naked just after dialysis.  Ignore their scale for now.  Then the morning before dialysis, weigh again, naked.  Strike an average between the two.  This is your hypothetical “balanced dry weight”.  Experiment but take control of the amounts they remove.  You can do it and it is your body.  Argue with then if they resist.  Remember, your dry weight will change.
2.    I am told that the dialysis machine filters with the water outtake and independently filters in another way.  Do not worry if they take only a single kilo.  Time on the machine counts.
3.   You may have a salt problem.  You are going to have to skip the processed meats.  Learn to cook raw foods.  Watch your nutrition report card.  Learn what it means.

Work at it.

gerald
 

[Riverwhispering]

Gerald what's a "nutrition report card"?  I wish i had one now to see how i'm doing

[ESRD Survivor]

May I ask why your doctor won't let you do PD?  I wanted to do PD after my 2nd failed transplant, but due to scar tissue it just wasn't meant to be.  I now am doing home hemo and love it.  I would be very pushy to do PD if thats what I wanted to do.  Unless you are medically unable to, then you should do PD if that is what you want. 

[Gerald Lively]

At the time they do the blood draw, they are also testing for nutritional values.  There should be a nutritionist on staff. That person produces a card that demonstrates how you are doing in the critical categories.  Demand a copy.  Treat your dietary report card and blood test results as if they were life and death.

If you are testing at home, be sure they are doing the comprehensive blood and dietary testing.  You are entitled to a copy of everything.

gl

[gothiclovemonkey]

my report card looks excellent except the fluid gain, and well this month my pth and phos was a lil higher than it usually is but I knew that would be because I was eating cheese and nuts instead of meat.

I cant do PD because my dr is... a meany head LOL
I tried pd a few years ago, and it was amazing but somehow the tubing got pulled? and i couldnt drain. I ended up with loads of fluid on my abdo. like 54 lbs of fluid ...
so i went to ER, and the er i went to didnt really knoiw what was up, assumed it was infections, admitted me. The blood test said No Infection... But while i was in there they needed to do some surgery on my arm, and also replace the cath for PD. By the time all this was done, I ended up GETTING AN INFECTION! (from the hospital!) So he decided to take it out, saying we cna try again some other time...
I do have alot of scar tissue but it seemed to work fine for me reguardless.
I just didnt tape it down enough, because after a month of taping it heaviily i was attempting to give the skin a break because adhesives dont like me!

[Riverwhispering]

Gerald would you please tell me what the different things are they test for in nutritional testing if you wouldn't mind?

[Gerald Lively]

River;

Units reported:

Albumin, Calcium, Phosphorous, Potassium, Urea Reduction Ratio (Kt/V), Hemoglobin, Triglycerides, Cholesterol.

gl