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Author Topic: Oh No, you didn't  (Read 6402 times)
twirl
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« on: June 12, 2008, 09:44:02 AM »

yesterday at D we were given a canary yellow printout informing us we get one cup per visit
one cup of ice, water, or coffee------- one
if you get ice and get cold and would like coffee---- it ain't going to happen
and our cups are 6 ounces not 8 and at times they are half full so you get three ounces of ice
and if you get medicine with a little water , does that count
and if you spill will you get another cup---- depends on your tech----- yes, I asked
techs get these for us in their own time
which means with this one tech, you are not getting anything----- you are lucky to be hooked up---- God forbide you have to use the restroom...
so does that mean I can not ask a tech for something when he/she is starting to nod off
I must say I have never heard of any patient asking for more than one cup of anything and we feel damn lucky to get that one cup
am I overreacting or is this just crap
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thegrammalady
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« Reply #1 on: June 12, 2008, 09:59:13 AM »

i solve the problem by bringing my own soda, or water with ice or coffee from home. our techs will get water my center has a pop machine in the lobby but doesn't have coffee. the techs always ask if there is anything they can get for you before they move on the the next patient.
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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okarol
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« Reply #2 on: June 12, 2008, 10:03:18 AM »



At Jenna's center the were no cups or ice. Everyone brought their own. The tech would ask at the beginning of the run how much fluid you would be drinking and they would adjust accordingly.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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monrein
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Might as well smile

« Reply #3 on: June 12, 2008, 11:22:35 AM »

At my centre, they serve us one cup of coffee or tea halfway through the run and ice as we ask for it.  I also tell them at the start how much I plan on drinking so we can take it off.  I think it sounds like crap as you said about your clinic but Twirl, I'd do what others have suggested.  Bring a thermos with your own stuff so you'll be less frustrated by their silly attitudes.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
KICKSTART
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« Reply #4 on: June 12, 2008, 12:06:06 PM »

I would do what the others said and take both a cold drink and a flask with coffee in then you have no need to bother anyone !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Kitsune
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« Reply #5 on: June 12, 2008, 12:45:20 PM »

At the center I go to, you get not a damn thing but hooked up and your meds given to you through the line. No water, no ice, no coffee. Hell, you even have to bring your own tissues.

 Flip, you're luckier than I am. And most of the techs raise hell if you ask them for so much as an adjustment to your machine.
« Last Edit: June 12, 2008, 12:48:01 PM by Kitsune » Logged

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« Reply #6 on: June 12, 2008, 12:57:07 PM »

When Marvin was in-center, there were no cups, no ice, no water, no coffee.  "You're not allowed anything to drink or eat while you're on the machine," the nurses and techs would say.  When Marvin's throat got so dry that he couldn't stand it anymore, he'd ask for two Tylenol (for an imaginary headache, arm ache, back ache, etc.) just so he could get a sip of water.  That, to me, is sad.

Now that he's home hemo, he gets all the drink, ice, and snacks he wants while he's on the machine-- though he usually just carries one 8-ounce drink with him at the start of his treatment and then eats the ice when that's done.  Occasionally, he'll carry a snack, too.  So to the nurses and techs out there, if you let the patients have just a little of what they want, most won't overdo it.
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Robby712
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« Reply #7 on: June 12, 2008, 04:52:04 PM »

The first place I was in center they let you have ice/water based on how much weight you put on in between treatments.  It was broken down into 1, 2, or 3 cups.  Nodoby ever got more than 3.  They didn't offer coffee and they didn't let you bring in any outside food or drink.  (other than hard candy).  The place I'm at now will bring you ice, water, coffee, whatever as many times as you want.  Many patients eat not only snacks, but entire meals while on dialysis.  Every M W F there is a 350+ lb guy that sits and eats 2 Big Macs, a Large Fry, and a HUGE Diet Coke (Health nut!) during every treatment. 

I'm thinking the first place had it right.
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Rerun
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« Reply #8 on: June 12, 2008, 05:02:21 PM »

The centers have NO right to withhold drinks from us.  They say dialysis patients aren't supposed to drink.  THAT IS JUST NOT TRUE!  We are to limit our fluid but that doesn't mean to dehydrate us during dialysis.  I walk out with some fluid on me because I want to go on as normal.  When they dehydrate you, as any one would feel like crap.  I am doing night time dialysis at this time and I bring my own ice water and a snack.  They don't say anything to me and if they did I'd tell them to go to hell! 

We are very well aware that we are supposed to limit our fluids.  The reason we go to dialysis is to get the toxins and fluids off us.  WE still have to eat and DRINK. 

I'd like to take these people and give them a plate full of salty French fries and then give them nothing to drink.  I know we aren't supposed to eat salty French Fries, but you get my drift.  OKAY, I'd like to follow them around for 3 days and hand them a tiny cup of water if they wanted a drink. 

OKAY now I'm thirsty!     :banghead;
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thegrammalady
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« Reply #9 on: June 12, 2008, 05:20:21 PM »

just another thought

"this is my life and you do it my way or you don't do it at all"

it's worked so far
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
Adam_W
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« Reply #10 on: June 12, 2008, 06:48:37 PM »

In my old centre, we only got ice, but we could have as much as we wanted. We could bring in our own drinks, as long as we didn't over do it (such as bringing six big gulps into dialysis). We could eat on the machine, but the staff didn't encourage it. I eat and drink what I want on home dialysis, even entire meals on some occasions. Don't tell my dietitian this, but I once ate an entire medium cheese pizza from Pizza Hut while I was on the machine. Like everyone else, I say bring your own drinks and tell them to kiss off if they protest.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
IUNurse
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« Reply #11 on: June 12, 2008, 07:04:35 PM »

My company has eliminated all ice machines in all of their clinics I think.  And we are not supposed to give water or ice.  I know the state board of health does not like patients to eat while on the machine for the risk of contamination to your food or whatever.  I wonder if that is an actual rule?  I was always told we couldn't refuse to let a diabetic eat, but others were not supposed to.  We let everyone eat, as that is a dumb rule.  However, it would be really gross if someone else's blood dropped into your food/drink while you weren't looking.... :puke;
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Robby712
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« Reply #12 on: June 12, 2008, 07:58:29 PM »

Quite frankly I can't even imagine eating or wanting to eat a meal while I'm hooked up.  Not only all the stuff that's around that could end up in your food...but I usually go from feeling "fine" to "garbage" or somewhere around there pretty quickly.  Sleeping, readling, and of course basic cable are what help me pass the time.  The ice I eat is to keep me from feeling totally washed out and I usually take a little more off if I do more than two cups. 

On my clinic days I will eat stuff with more sodium than normal just so I don't feel bloated all day...or a couple days...whatever.  But I can't see myself walking in with a bag from Subway...wouldn't that kind of make weighing in and out worthless?

Oh well, to each his own.
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thegrammalady
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« Reply #13 on: June 12, 2008, 09:08:48 PM »

  However, it would be really gross if someone else's blood dropped into your food/drink while you weren't looking.... :puke;

if chairs in your clinic are so close together that blood could drop into someones food/dring they are too close and you're not setting your machines up right.
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s
......................................................................................
If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

Meddle Not In The Affairs Of Dragons
For You Are Crunchy And Taste Good With Ketchup
Robby712
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« Reply #14 on: June 12, 2008, 11:19:49 PM »

  However, it would be really gross if someone else's blood dropped into your food/drink while you weren't looking.... :puke;

if chairs in your clinic are so close together that blood could drop into someones food/dring they are too close and you're not setting your machines up right.

Have you ever seen a needle come out on accident?  That stuff will spurt a few feet under the right condidtions.
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kevno
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« Reply #15 on: June 13, 2008, 09:42:30 AM »

In the unit I am on. In the morning Breakfast comes around cereal, toast or biscuits. Plus Ice, tea or fruit juice. Then around 11.30am lunch, sandwich or biscuits. Plus Ice, tea or fruit juice. We are asked at the beginning of dialysis how much we are going to drink. then that is added to the UF.

All I have is the Ice. But in our new unit there is a lot of space between the Beds. We use to be in chairs, close together in the old unit. Any patients with infections go to the isolation unit, there are five single rooms. But you would be unlucky to get any blood of another patient on you. I usually have the side curtains closed. The only ones I have got with my blood is the Nurses :yahoo;
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"RENAL PATIENTS NEVER GIVE UP!!!!!!"
twirl
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« Reply #16 on: June 13, 2008, 10:44:02 AM »

Kevno            do you D in Heaven                   sounds too good to be true                happy for you
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BigSky
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« Reply #17 on: June 13, 2008, 02:14:12 PM »

Centers are moving away from letting people eat and drink because of problems with patients aspirating if they pass out or choking on food as its eaten.

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Bajanne
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« Reply #18 on: June 13, 2008, 03:59:09 PM »

In my centre, there is a water cooler and cups.  You only have to ask a nurse to pass you some water.  The only thing is they tend to give you just about 200 ml.  However, you are free to bring anything you want to eat or drink.  And if someone says that they are hungry, they will give you crackers and cream cheese with some cranberry juice.  No ice.
Our supervisor once told me that they would prefer people not to eat, and she recounted a story of a man dying after something stuck in his throat, but she stopped short of forbidding it.

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Ang
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« Reply #19 on: June 13, 2008, 04:43:51 PM »

twirl,   its  nothing  but  crap,bring  in  your  own  food  and  drink,


kevno   i  want  some  of  what  your  having  at  dx :bow;
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live  life  to  the  full  and you won't  die  wondering
alrightstill
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BAH!

« Reply #20 on: June 14, 2008, 11:38:07 PM »

Wow!  They never offered us ANYTHING to eat or drink -- unless it was a holiday and they'd offer us a cookie --- ON OUR WAY OUT OF the center as we were leaving.   :Kit n Stik;

I love dialyzing at home though, and being able to eat or drink what I please when I please is definitely one of the main reasons.   :bandance;
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1992 @ age 12 i was suddenly diagnosed with ESRD. 
1992 - 1995: Peritoneal Dialysis
1995: Cadaver Transplant
2001: Kidney rejects, back on PD
2002: too much scar tissue prevents PD from succeeding, go on hemo via permacath,
         transplanted kidney is removed.
Dec 2004 -- 2009t: on NXSTAGE (with the bags NOT pureflow) 6x a week via permacath
Dec 2009: Transplant from a pal
Oct 2016 - present:  Transplant fails, back on NxStage w/pureflow via femoral cath, patiently waiting for next kidney
draven
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« Reply #21 on: June 15, 2008, 02:32:44 AM »

Wow. it sounds like some units are pretty harsh.

The unit i go to offers us a menu and we can order full meals with desserts.
and as far as fluids we can have one cup of tea or coffee or apple juice. but pretty much no limits on ice/water.
unless your severely overloaded or not well.


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karen547
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« Reply #22 on: June 15, 2008, 12:33:27 PM »

A FULL menu?? Wow where do you dialyze?? We can get all the ice and water we want, but giving patients coffee is ''against'' the rules! I mean they walk around guzzling the stuff but when we  are sitting there freezing our butts off, we cant get a lousy cup of coffee!
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draven
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« Reply #23 on: June 15, 2008, 12:43:50 PM »

Hi.

I Currently Dialyze at a Hospital here in Cape town, South Africa.
The Menu is OK, you get to choose between 4 main dishes which change each day. you can get spaghetti bolognese or roast chicken or fish.
for Dessert you can have Jelly (Jello) and Custard, or Cheese cake & Fruit Salad. although they took the fruit salad away from me, because it had oranges in it :(. Strange thing is they never took away the Cheese and tomato sandwich from me. ;D
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Robby712
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« Reply #24 on: June 15, 2008, 02:54:07 PM »

Geez.  You eat better on dialysis than I do when I'm not. 
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