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kitkatz
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« on: August 28, 2006, 10:27:00 PM »

EeeGads!  It is hot in Southern CA and am I thirsty!  I could drink a gallon, no an ocean of water and still not get enough. It is driving me crazy!  Now I know all the tricks of the trade to do when you are thirsty, freeze grapes, freeze a water bottle, chew on ice.  I just want to complain a little!  If I see one more person slug a coke down in front of me and go get more I may cry. I may cry anyway!  My mouth gets so dry at work. I try chewing gum but the damned  jaw pain gets in the way. I suck on candy but then the tummy gets upset.  And my skin is so damned dry because I never get enough to drink to hydrate it a little bit!  Okay there it is my whine.  Maybe I need a little cheese and crackers to go with it!
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #1 on: August 28, 2006, 10:39:48 PM »

I know the feeling all too well Kit, what i used to do is fill a large glass with crushed ice only, every 5 - 10 minutes i used to just drink what has melted,  i know it doesnt satisfy the thirst but it takes awhile to finish.  I tried the grapes and to me, that did nothing,  i know you know to stay away from sweet and salty things cuz that makes you more thirsty right?  omg,  now i am thirsty, ugh, lol
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Panda_9
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« Reply #2 on: August 29, 2006, 04:33:10 AM »

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« Last Edit: August 29, 2006, 04:36:26 AM by aMbEr_79 » Logged
Panda_9
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« Reply #3 on: August 29, 2006, 04:35:13 AM »

Thanks for the damn reminder that Im thirsty all the time! LOL
I drink out of a 250ml measuring cup (most of the time) and what I usually do is fill it with cordial or water, and put it in the freezer for an hour or so. You end up with a nice slushy to savour. I also have been trying to avoid salty foods as it honestly does make the thirst a whole lot worse. I also like to eat the little 140g tubs of fruit in juice, nice and cold. The trouble is, when you have kidney failure NOTHING will stop the thirst. You can go and drink the whole towns supply of water and it still wont help. And I also think that knowing its something we cant have a lot of, only makes us want more of it.
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stauffenberg
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« Reply #4 on: August 29, 2006, 10:19:28 AM »

If your thirst becomes intolerable, you can always request that your dialysis prescription be increased by an hour per session or so or you can dialyze four instead of three times a week.  My dialysis center was always quite willing to do that for people who routinely had too much fluid to remove per session.  I usually gained between 4 and 4.5 kilos of fluid between sessions, which was the maximum I could stand to have removed.  But if I ever found, to my surprise, that I had gained more than that, I simply lied about my weight to keep the fluid removal in the tolerable range, and then added the unremoved fluid to later sesssions, whenever I had gained less fluid than my maximum.

One branch of seventeenth-century philosophy, called theodicy, used to specialize in proving the existence of God by finding coincidences in nature which tended to show that the world had been designed by an intelligent and kind being.  The fact that high creatinine levels increase thirst, that dialysis patients have elevated creatinine, and that the nature of the dialysis process is such that patients have to restrict their fluid intake, seems to me to be a coincidence that undermines the ambitions of theodicy!  Ditto for the fact that 40% of dialysis patients are diabetics, whose high blood sugar levels also make them more thirsty than the average person. 
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mallory
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« Reply #5 on: August 29, 2006, 01:39:15 PM »

I didn't realize that elevated creatinine levels could increase thirst.  That's bad (of course), but I am relieved to hear it.  It seems that every time my doctor tells me something, I'm immediately drawn to do something else.  For instance; he told me to limit my fluid intake, and I'm much more thirsty now than I ever was before.  He told me to limit protein, and I told him it shouldn't be an issue because I could practically live on carb's, but all of the sudden I really want to go out and have prime rib for dinner.  He tells me to limit salt, and I swear I could eat a whole bag of potato chips. 

I thought I just had kind of a contrary personality, but at least now I know that I really am thirsty, and there's a reason for it!
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kitkatz
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« Reply #6 on: August 29, 2006, 05:24:54 PM »

I just had to complain last night.  All I want to do now is cry and whine and complain.  I know that everything is okay, but still... I just want to scream in frustration about everything! The thirsty part of it is only the top of it.  GRRRR! Whine! Complain! Scream!
« Last Edit: August 29, 2006, 05:53:49 PM by kitkatz » Logged



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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kitkatz
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« Reply #7 on: August 29, 2006, 08:33:11 PM »

Okay I know, I know I already added to the thread, but I need to rant at someone and the hubby is feeling pretty good and I do not want to shoot his good mood down.

Yes, I started with thirsty all the time the other night. It is just the beginning of the rant I have tonight. I am thirsty, I am thirsty for a nice 44oz drink from the local store with lots of ice and liquidy cooling down my throat. But it is not possible, so one of you caregivers go out there and have a soda for me and enjoy every bit of it in my name. Okay? I would even pay for it but paypal is not accepted at the local seven-eleven stores around here. 

I am tired. God, am I tired.  I have no idea how to say this, but I am exhausted.  I know I have said it before but geez!  I come home from work and sleep for an hour or so, or go on the computer.  That is it.  I don't even want to cook dinner for us.  I just do not care about dinner on nights when I am home.  I want to eat, but do not want to cook. Thank goodness right now on dialysis nights we have the CNAs cooking.  Victor eats well. His CNAs make sure he has a good lunch. 

School has given me five periods to teach now instead of four with a collaborative period.  This schedule may kill me off.  I am having chest pains during the school day.  They say it is stress.  No, really, stress, I can't imagine I have any stress!  The schedule is crazy.  With test scores our school has and the new NCLB crap we just live in a stressful fishbowl.  I think these people want miracles and I cannot produce one out of my ass overnight!  How am I supposed to teach kids who cannot add and subtract or divide, proportions and ratios and fractions and geometry???  How can I fit it all into their brains?  All I can say is I am trying.

Dialysis...I hate it right now.  I really think it sucks deeply.  I am sorry to you positive people who tell me it keeps you alive, I know this!  I just think running to dialysis after work every other day sucks.  I get into the chair and fall asleep because I am tired from working all day long.  Then I have to keep on eye on things.  The other day they had the wrong dialyzer up on the machine and when I told them I needed the purple dialyzer they told me "everyone uses this one today"  I told them I did not care what everyone was using today I wanted the correct dialyzer on the machine or I would not go on it.  They had to track down the DON  and ask her which dialyzer was correct.  They found out I KNEW what I was talking about!  I have an allergy to certain dialyzer fibers and to reuse renalyn.  Why can't it be easy for me?  Then I get home and go to bed. Sometimes have dinner sometimes not. Depends on how rough dialysis was on me.  After almost eight years you think it would be routine. It is not!

Home...Yeegads, home!  The house is in an interesting array right now.  I just look at it and go ah!   Besides the ant march is subsiding in my office now.  Just a few walking through on their way to wherever.  I hate ants. HATE THEM!  I hate thinking they are crawling on me.  Ick!  It is a mess right now. Carpets are pulled; trees are halfway down in front of the house.  We have a foundation crack in the floor and walls of the den and hallway all the way to the kitchen.

Victor is doing okay.  The wound is healing and he feels pretty well. I worry about him, but try to keep it to myself.  I want him up and moving soon and he says things like in a year or two.  I want to scream.  I know these things take time. 

So there is my rant, scream or whatever.  Take it at face value.


l


« Last Edit: August 29, 2006, 08:48:51 PM by kitkatz » Logged



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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
redheadedangel
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« Reply #8 on: August 30, 2006, 09:03:33 AM »

Elevated blood sugars can also make you extremely thirsty.. Go ahead scream, have a hissy fit we deserve to do that occasionally.. Then go get that cube of ice and accept reality.Although it often stinks.Piss somebody off by crunching it in their ear..it will make you feel better.. devil made me say that..lol...... Use herbs on your food instead of salt. Take up ice carving as a hobby... a new outlook on your new friend the cube of ice..I went on a cruise but they banned me from the ice carvings..I had become addicted.They caught me perched on top sucking on the statue... ::) ;D :-X. Sassy
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« Reply #9 on: August 30, 2006, 04:36:31 PM »

My other half anyways complains about my ice crunching  >:( WTF else am I supposed to do?!?!
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redheadedangel
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« Reply #10 on: August 30, 2006, 05:57:34 PM »

For real...suck it and choke then he'll have to do CPR..Bet he will never complain about the crunchin then.Hum...Might like that CPR..Coule lead to whoopie. :-X :o No Sassy didn't say that!...
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« Reply #11 on: August 30, 2006, 08:19:33 PM »

Man, I feel terrible that y'all are having so much trouble with thirst.  Are you running sodium profiles?  I've learned that if they give me sodium during treatments, it makes me voraciously thirsty...  I mean wanting to just slam back Coke after Coke for hours after treatment.  So I always check and make sure they do not run a sodium profile.  I noticed the sodium light was on today after 30 minutes and reached over and punched it off.  I've been told that theoretically it will make no difference, but that's complete bullshit, they should try it.  If you come in too heavy, you may need sodium to hold off cramps and crashes though.

My best trick is to eat with no drink to wash food down.  That sounds impossible, but it's not.  You will find that after a few minutes you forget about it and realize you feel just the same whether you had washed it down or not.  Then after your meal you have the luxury of being able to knock one back like in the good old days.  Just for the hell of it, see how long you can wait before you do it.  I also nurse a can of Coke for a few hours.  I've learned to swallow a smaller amount in such a way that I still feel that good cold burn in my gullet as it goes down.  I just try not to do it every time I pass the fridge (Pepsi goes flat way before you finish it.  A can of coke or gingerale will last a few hours, and 3 cans is about a kilo).  It's hard not to obsess about it though.  I know you know that, so I hope you're not screaming at me for giving more redundant advice.  I have obsessed over almost everything they've told me I couldn't have, even if I really didn't care about it before.

Kitkatz, If your skin is not hydrated, do you think you're targeting too light?  Then again I know my skin gives me hell if I have high Phos.
I have not read about what happened to Victor, but I know that weighs heavily on both of you.  Hopefully the good-day/bad-day cycle will get more good days as you trudge along. 
Any questions in this post are strictly rhetorical.  No need to pound a difficult subject into the ground.
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angieskidney
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« Reply #12 on: August 30, 2006, 08:48:38 PM »

I don't drink coke myself because of the high phosphate (I actually love Pepsi but .. well both of these count) so instead I drink Rootbeer. I used to not but since I am allowed that I feel it is now the next best thing. But I hate warm pop and find if I have it at the computer I will drink it all without thinking .. so I leave the 355ml can in the fridge and drink a few sips when ever I am dying for a nice cool drink. I don't do any of the crap the dietitian suggested as I am not going to bring a 1L container where ever I go to measure everything ... grrr I want to live like a NORMAL human being! Bad enough people stare at my arm! Don't need them staring and asking themselves "Why is she measuring her drink??"

When I get home I don't feel like cooking neither ... or much else...
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« Reply #13 on: August 31, 2006, 04:51:07 AM »

Angie..Get Redhair.They won't stare at your arm anymore.LOL... >:D Sassy
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stauffenberg
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« Reply #14 on: August 31, 2006, 09:40:02 AM »

Many times I have listened to the dialysis nurses criticizing patients mercilessly for having gained too much fluid between sessions.  Interestingly, one of the nurses accepted a dare from the patients and tried to get by for just one day on the fluid restriction imposed on most patients.  She had to admit that she had used up her entire day's quota of fluid by 11 AM.

I have seen this same pattern in many branches of medicine.  When medicine fails disastrously in its ability to treat a severe disease, it looks around for someone else to blame so that its own prestige will not suffer, which might eventually lead to the public being less willing to tolerate the huge salaries and social power of doctors.  The failures of the treatment, in itself  inadequate, are blamed on the patients' non-compliance with a treatment program which is imposisble to tolerate.
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« Reply #15 on: August 31, 2006, 05:26:44 PM »

IMO the problem lies in recommended sodium intake of patients.

For a healthy person they are suppose to take in no more than 2,400 milligrams and drink at minimum 2 liters of water a day.  Most people take that amount easy and while they do not drink the water they tend to drink soda and everything else well over 2 liters even though most don't think they actually drink all that much. 

Most dialysis patients here are told to limit sodium to 2,000 milligrams and drink  .5-1.5 liters maximum a day depending on the person.

So we are suppose to keep sodium almost the same but drink a maximum of fluid total that is less than healthyy people are suppose to drink at a minimum ;D  Doesn't make too much sense.

To keep sodium level down is pretty tough when they add sodium to almost everything there is nowdays.  Even the new trend of soaking fresh meats in sodium/phosphate solutions to improve its flavor.
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angieskidney
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« Reply #16 on: August 31, 2006, 08:43:44 PM »

To keep sodium level down is pretty tough when they add sodium to almost everything there is nowdays.  Even the new trend of soaking fresh meats in sodium/phosphate solutions to improve its flavor.
Why do they do that anyways? I know fast food places are REALLY bad for that (except for Arby's in my city which advertises how their chicken doesn't have that additional phosphate - keep in mind all breaded meats still have it).
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« Reply #17 on: August 31, 2006, 09:01:10 PM »

I guarantee you no one here is going to die of dehydration!  >:D
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kitkatz
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« Reply #18 on: August 31, 2006, 09:44:17 PM »

I know I will not!
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #19 on: August 31, 2006, 09:52:00 PM »

Why do they do that anyways? I know fast food places are REALLY bad for that (except for Arby's in my city which advertises how their chicken doesn't have that additional phosphate - keep in mind all breaded meats still have it).


They say its to enhance flavor but its because the quality of the meat has gone down IMO.

Not sure if this will burst your bubble about Arby's, but indeed they do not add phosphates however without those phosphates those chicken sandwiches still range from 900 to almost 2000 mg of sodium a serving.:o  :-\
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Zach
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« Reply #20 on: August 31, 2006, 10:03:03 PM »

I discussed this with my Nephrologist, and he now has me on sodium variation (SVS).  The last hour the sodium is automatically lowered.  I'm no longer thirsty the night after dialysis.

But be warned:  if it is not properly adjusted, you could have a very bad cramp near the end of treatment.
« Last Edit: September 29, 2006, 08:15:43 PM by Zach » Logged

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kitkatz
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« Reply #21 on: August 31, 2006, 10:07:40 PM »

I was having very bad cramps midway through dialysis before they put me on sodium variation.  Oh man two and a half hours into it I was cramping and needing fluid, but the weight was not coming off. You can adjust it to meet your needs.  Ask questions!
« Last Edit: September 02, 2006, 05:07:53 PM by kitkatz » Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
angieskidney
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« Reply #22 on: August 31, 2006, 10:15:06 PM »

I was having very bad cramps midway through dialysis before they put me on sodium variation.  Oh man two and a half hour sinto it I was cramping and needing fluid, but the weight was not coming off. You can adjust it to meet your needs.  Ask questions!
I ask my questions here because it seems I can't get them at dialysis :(
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kitkatz
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« Reply #23 on: September 02, 2006, 05:07:12 PM »

I was having very bad cramps midway through dialysis before they put me on sodium variation.  Oh man two and a half hours into it I was cramping and needing fluid, but the weight was not coming off. You can adjust it to meet your needs.  Ask questions!
I ask my questions here because it seems I can't get them at dialysis :(

I know you ask questions here to get answers, that is why I said it.  I know the people at dialysis are rubes when it comes to answering questions.  One aide told me yesterday that when she was trained they had to know what happens to everything on the machine and what it all did... Now she said all they do is throw you on the floor and give you on the job training on the machine because it does it all automatically and you do not need to know the whys and wherefores of anything in order to treat a patient.  Sucks doesn't it?  Also very scary when you ask questions and they cannot answer them.
« Last Edit: September 02, 2006, 05:12:11 PM by kitkatz » Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
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« Reply #24 on: September 02, 2006, 05:22:51 PM »

Thanks, now I am thirsty. I think that I will go get some ice. LOL
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