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Author Topic: Still about fluid control  (Read 12231 times)
kristina
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« Reply #25 on: January 16, 2017, 02:28:57 AM »

I eat ramen noodles and have never had a problem with them.. my labs show that I don't have to completely adhere to the diet.. I can cheat here and there and it's not going to affect me... I also keep several packets of the flavoring in my dialysis bag, for the days that my bp drops.. put the flavoring in a cup of hot water and drink it.. brings the bp back up very well

Hello Riki,
Please tell me what the word "flavoring" means and what sort of it you put into your dialysis-bag?
Many thanks for the info from Kristina. :grouphug;
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  He was completion and fulfillment in itself, like a meteor which follows its own path.
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Charlie B53
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« Reply #26 on: January 16, 2017, 09:16:42 AM »


LOL, I am pretty sure Kristina meant the bag that she carries her supplies in to the Clinic.  Definitely NOT to go into any dialysis fluid. 

Any time blood pressure drops below an acceptable level it is possible for the circulating volume to be drawn down too los.. The addition of salt added to a cup of water is a way of increasing the circulating volume as the body more readily absorbs salt water quicker than plain water.  The blood has to contain that small amount of salt or other things go wrong quickly.  This the reason IV fluids in Hospitals contain that 5% salt.  Very close to the bodies needs.

hope this helps.
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BigDadii
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« Reply #27 on: January 17, 2017, 08:28:46 AM »

@angiepkd
i haven't even come close to your experience with your ERSD and I thank you for you response.  :bow;I also go to Davita.  it  was when I was drinking the wine spritzers (homemade) that i only gained 3Kg's.
does alcohol dehydrate  you and cause you to come in lighter? and  Why can't we take diuretics to help with our  fluid intake ?
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Michael Murphy
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« Reply #28 on: January 17, 2017, 08:54:31 AM »

Post cardiac issues I am on lasix but have been sternly warned to not take them on dialysis days since they can screw up body chemistry on dialysis days.  Plus I have RKF (Residual Kidney Function) I was not fluid restricted prior to my heart attack, if you don't pee the diuretics don't work.
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Charlie B53
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« Reply #29 on: January 17, 2017, 01:02:10 PM »


Because I still have some residual kidney function, p'ing less than a liter a day, I take three 40MG tabs twice a day, plus something that helps the lasix work.  I'll remember the name in a little bit.  Starts with M.    Matalazone.   Or very close to that.


No one has ever mentioned that lasix taken day of treatment could have an impact.  Where do I learn more?
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Angiepkd
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« Reply #30 on: January 18, 2017, 08:20:58 PM »

I am not sure about alcohol and dehydration, and I haven't tried it to see if it helps me come in lighter. Something to think about. Right now, I am unable to have any alcohol because of my C diff treatment. I guess alcohol can do a number on the good bacteria in your gut. I am going to ask about it when I get home. I do take lasix, and barely urinate any more. No one has told me not to take it on dialysis days. If you find any good info on this, please post!  Big dadii, I hope you figure out a way to make it all work.  Dialysis takes a lot out of us and away from us, so it would be great to hear a fluid success story that doesn't involve being thirsty all the time or avoiding some of the simple things others take for granted (like an ice cold beer in a frosty mug)!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Charlie B53
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« Reply #31 on: January 19, 2017, 05:36:15 AM »

Dialysis takes a lot out of us and away from us, so it would be great to hear a fluid success story that doesn't involve being thirsty all the time or avoiding some of the simple things others take for granted (like an ice cold beer in a frosty mug)!

Alongside a large Supreme Pizza!    With ALL the toppings!


Those days are long past.

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Michael Murphy
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« Reply #32 on: January 19, 2017, 02:58:47 PM »

Post heart attack, before my ejection fraction went up I was unable to sleep because my lungs were filling with fluid.  I repeatedly asked for oxygen to use at night but was told it probably was sleep apnea.  I explained that it wasn't sleep apnea because the breathing problems lasted for several hours sitting up.  The only sleep I was getting was during dialysis because they put me on oxygen. Desperate I started taking lasix on non dialysis days and told the nurse practitioner that I was taking lasix every day.  She literally freaked telling me that lasix and dialysis could screw up my body chemistry. 
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cassandra
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« Reply #33 on: January 19, 2017, 03:18:04 PM »

She literally freaked telling me that lasix and dialysis could screw up my body chemistry. 

It affects your K+, your not working kidney won't correct it.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
Michael Murphy
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« Reply #34 on: January 19, 2017, 07:08:28 PM »

Cas you are exactly right that's what she was so heatedly explaining to me when I was in the chair during dialysis.  All I know is I have been following her schedule ever since. 
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AshtonsMuse
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« Reply #35 on: January 20, 2017, 06:25:12 AM »

My husband takes lasix 80mg a day, and no one has ever told us it would interact with his dialysis/potassium.  The more I learn about this, the worse our center seems.
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Riki
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« Reply #36 on: January 21, 2017, 06:00:32 PM »


Hello Riki,
Please tell me what the word "flavoring" means and what sort of it you put into your dialysis-bag?
Many thanks for the info from Kristina. :grouphug;

Most ramen noodles come with some kind of a flavor packet.  The ones I usually get are either vegetable or chicken.  I don't always use them, so I have a few of them in my dialysis bag (and yes, that's the kitbag that I keep my blanket, sweater, slippers, and gloves, not to mention emergency gauzes and bandaids, for dialysis).  The packets are mostly salt and some kind of artificial flavoring.  If you put it in a cup of hot water and drink it when your bp drops, it will help to bring the bp back up again.  When my unit was in a nursing home, instead of the hospital like it is now, they would keep bouillon cubes on hand for the same reason.  They'd dissolve the cube in a cup of hot water and have you drink it.  The flavor packet is the same idea, it just tastes a little better, plus, the hospital doesn't let them keep things like that on hand.  They can't, however, stop me from keeping things like that on hand
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transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
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kristina
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« Reply #37 on: January 27, 2017, 01:04:12 AM »

@Kristina I've also wondered about eating soup like Ramen noodles or chillie (during the winter I like eating soup)

Sorry, BigDadii, I have only just now noticed your interesting thought...
... I have become extremely cautious about soups and have to consider them as an absolute luxury,
which I only allow myself to indulge in about once a month and only,
 when I my monthly blood-readings could not have been any better.
... It's all about liquid-control...
... Such is life on dialysis ... :grouphug;
« Last Edit: January 27, 2017, 01:05:13 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
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« Reply #38 on: January 27, 2017, 01:13:05 AM »


Hello Riki,
Please tell me what the word "flavoring" means and what sort of it you put into your dialysis-bag?
Many thanks for the info from Kristina. :grouphug;

Most ramen noodles come with some kind of a flavor packet.  The ones I usually get are either vegetable or chicken.  I don't always use them, so I have a few of them in my dialysis bag (and yes, that's the kitbag that I keep my blanket, sweater, slippers, and gloves, not to mention emergency gauzes and bandaids, for dialysis).  The packets are mostly salt and some kind of artificial flavoring.  If you put it in a cup of hot water and drink it when your bp drops, it will help to bring the bp back up again.  When my unit was in a nursing home, instead of the hospital like it is now, they would keep bouillon cubes on hand for the same reason.  They'd dissolve the cube in a cup of hot water and have you drink it.  The flavor packet is the same idea, it just tastes a little better, plus, the hospital doesn't let them keep things like that on hand.  They can't, however, stop me from keeping things like that on hand

Many thanks Riki for your kind explanation, it is very much appreciated.
Fortunately I have not come across bp-problems yet, but it is good to know what to do, just in case...
and I have just put a vegetarian-bouillon-cube into my own dialysis bag, just in case ...
Many thanks again from Kristina. :grouphug;
« Last Edit: January 27, 2017, 01:15:12 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
BigDadii
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« Reply #39 on: February 05, 2017, 11:50:14 PM »

Ok folks i love and appreciate all your help and answers to my fluid questions. I've never been told I am a RKF but I too still urinate a little. My nephrologist is the one that took me off the lasix and didn't tell me why.
Right now I'm dealing with a cold and I'm a mouth breather so my mouth is dry alot and I'm eating a lot of ice. I've been doing ok with my fluid.

To the leaders of this loved forum are there any forums like this about diabetes ?
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Charlie B53
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« Reply #40 on: February 06, 2017, 03:08:12 AM »


Many of us are also Diabetic. I was finally diagnosed and handed the insulin pens 6 months after starting PD.

I have written down EVERY sugar test AND every injection.  Within 3 months I brought my A1C down from 10+ to 6.2

I kept track of everything like that for my first couple of years, then after becoming so well controlled and being very careful about my Diet, I haven't needed but a very rare injection of 2 units of fast.  I take my Lantus Religiously every evening.

It hasn't been easy.  I have radically changed how much, and what I eat.  NO JUNK.

How can we help you?
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PrimeTimer
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« Reply #41 on: March 18, 2017, 11:48:12 AM »

I've been adding green/red/yellow bell peppers and onions every day to my husband's meals. He says he is less thirsty after those meals. I simple chop up about 1/2 cup of them and saute them with a little canola oil before adding to his eggs or whatever. I sprinkle a little black pepper, onion powder and parsley on them while sauteing and then mix them in with his food.
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Michael Murphy
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« Reply #42 on: March 18, 2017, 01:54:34 PM »

I to am a mouth breather and during the period after my heart attack I started using a dental rinse sort of a mouth wash lite after the rinse I usually rinnse again with a little bit of water. Dry mouth is also beaten with a spray or candy.
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Riki
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« Reply #43 on: March 18, 2017, 05:45:23 PM »

I don't know if I've mentioned this in this thread or not..

A few years ago, I went to walmart and bought a counter top ice maker, so I always have ice on hand.  I have an old style sports bottle, kinda like the ones you see hockey players using.  When I first got the ice maker, I filled the bottle with ice and let it melt, then measured the water.  It was about 300mls of water, so that's pretty much how much water the ice will give me.  I fill the bottle and drink the water as the ice melts.  As long as I don't cheat and chew the ice, it will last me a few hours
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
smartcookie
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« Reply #44 on: March 21, 2017, 01:23:01 PM »

I had sinus and deviated septum surgery in October, and a saline sinus spray helps with my dry nose, sinus and throat.  I wonder if it would help with the dryness from fluid restriction.  Just a thought.  I googled it and there isn't a whole lot of information saying it helps, but some people think it does.  At the very least it is fluid you won't have worry about counting towards your limit!
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Michael Murphy
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« Reply #45 on: March 21, 2017, 02:11:23 PM »

During my two and a half week stay in the hospital was the cardiac menu  had a low or now salt chicken soup. I got a bowl of it twice a day and a side of either noodles or rice which I put in the soup.  It was heavenly having chicken soup for the first time in four years. 
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