I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: thevijaysingh on January 11, 2017, 07:05:58 PM
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I have been on in-center HD for 8 months now. Ever since my dialysis started and the fluid restrictions were implemented, I have been a lot more thirstier than I used to be earlier and only the thoughts of water and beverages cloud my imagination for the better part of my day.
The doctor/s told me that all the liquid/s combined (water, milk/curries) should not exceed 800 ml a day. As per the doctor the weight gain between two sessions should not exceed 2 kg. I started off in April and since that is when it is scorching hot here in India, my efforts of limiting liquids did not yield much result and I used to have weight gains of 4 - 4 1/2 kgs between two sessions. The technicians at the center used to counsel and advise me on limiting the fluids.
As per them the higher the UF goal in a session, higher are the chances of passing out due to hypotension / low blood sugar and various other complications as the dialysis machine separates water from the blood and is very taxing on the heart.
I have tried numerous ways of trying to stay hydrated while being within the fluid restriction but apparently have not been too successful with them.
I am not sure whether is for the good or otherwise, I have developed of liking for ice for some time now and prefer eating cubes / Popsicle instead of drinking water but even that is not really helping as I still feel I am not quenched and the yearn for ice cold water / beverage is always on my mind.
I have read it here and online that colorless codas -sprite and 7up may be fine(not a big fan of the black ones anyway) but I am more of a Fanta (orange) guy myself. Sometimes ice cold water just doesnt cut it for me and I need that carbonation. Please suggest what are the alternatives and how can I add a beverage other than ice cold water to my routine which can replace the off the shelf aerated drinks as I believe they have a lot more sugar and other bad stuff as compared to something I can concoct at home myself.
EDITED:Moved from off topic to general discussion- kitkatz,Admin
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First off all fluid is counted, but in addition if it melts like ice cream it also counts. One of my companions in dialysis tells the story of a summer picnic he attended after starting dialysis, they were serving very sweet watermelons, he claims he ate most of two of them. On Monday he arrived at dialysis and stepped on the scale and he gained an amazing 10 kilos. Watermelon counts ounce for ounce as fluid. Much to his chagrin he learned this too late, he had to go to dialysis every day that week. There is no magic bullet for this, fluid management is the hardest part of ESRD. However there are tricks. Some are freeze grapes, pop a couple in your mouth and let them defrost. Get a spray bottle spray water into your mouth, I use a squirt gun during the summer. The other thing to watch is salt, read all product descriptions and be careful of salt in foods, in America Bars always serve salty snacks for a reason, more salt more drinking. This is doable not easy but doable. In the 4 years I have been in dialysis I have seen people fail to master this and have heart attacks, in the last 3 months 3 people who regularly had 4 kilos pulled had fatal heart attacks. We all have bad days but the fluid fight is one me must win. Good luck.
sp mod Cas
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While in the hospital getting my PD cath out and the Hemo cath put in. I had the bright idea of sucking on those gummy bears my Grandson likes.
I went to the patient store and bought a bag. On my way to my room I ran into one of the Nephs in the hallway. Proud at my idea I showed her what I had purchased. She frowned and told me of a patient that had severe problems with his labs, it was determined to be those same gummy bears. Far to high in Phosphorus. She went on to tell me the minty products are far more acceptable but you may have to allow for the sugar contained.
I went back to the store and exchanged the gummies for Lifesaver Mints. They do help with the dry mouth. As do many of the caramels.
sp mod Cas
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Chewing gum helps, and as I'm lucky enough to not be diabetic, I eat about 14 rolls Mentos (chewy mints) a week. Rarely gain more than 0.5 kilo a session.
Good luck, Cas
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One more thing dark sodas are sometimes acceptable. Colas are always bad, but other flavors are possibly ok. Some root beer,cream, black cherry for example can be ok. You need to check for phosphorus by Brand, flavor, and oddly container.in the US oddly one brand of root beer is ok in a bottle but bad in a can. The internet is your ffriend a quick search and you know if it's ok.
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Chewing gum helps, and as I'm lucky enough to not be diabetic, I eat about 14 rolls Mentos (chewy mints) a week. Rarely gain more than 0.5 kilo a session.
Good luck, Cas
That is amazing! :clap;
I would love to achieve what you have mastered already. What is your fluid intake per day? Do you go for HD twice / thrice a week ?
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For the last 5 yrs I'm on home hemo (Nxstage) and drink when I want, a bit, and have officially 4.7 x 2.5 hr sessions. But some times more, sometimes less.
The 10 yrs in-center D (before home D) I drank less than about 3/4 liter a day, and did 3x 2.5 hrs a week. ( you actually get used to drinking less, even when it's warm outside).
Is it poss for you to do either peritoneal (PD) or home HD?
Love, Cas
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Many thanks MM
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For the last 5 yrs I'm on home hemo (Nxstage) and drink when I want, a bit, and have officially 4.7 x 2.5 hr sessions. But some times more, sometimes less.
The 10 yrs in-center D (before home D) I drank less than about 3/4 liter a day, and did 3x 2.5 hrs a week. ( you actually get used to drinking less, even when it's warm outside).
Is it poss for you to do either peritoneal (PD) or home HD?
Love, Cas
I started off in April and have been doing 2 X 4 hr sessions / week(in center). I dont think Home HD would be an option for me because I feel it might affect my work schedule at work(shifts keep on changing). I am not too keen on the PD thing either as the AV fistula is probably as far as I can go with surgical procedures(except a transplant) and dont want another catheter inserted into my stomach.
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I know you said Fanta but my guy liked the Sunkist if you have that brand chk it as I think it is better for phosphorus there is a site online I went to that lists dozens of beverages for sodium and phosphorous. Somewhere in my memory I think I heard of a med that helps create saliva also any meds you take try to review for dry mouth side effects and discuss with your doctor
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Do you happen to be diabetic? I've found the best thing to help control thirst is tighter bloodsugar control. Sour candy (I love me some sour patch kids!) and frozen fruit, like grapes, are also great ways to help with thirst. I saw someone mention gum already as well, breath mints help too. Sunkist is a good one for dialysis patients as well since there isn't any phosphorus in the preservatives they use,t here is a little bit of potassium though, and it does contain caffeine, so be careful if you are hypertensive.
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India? I was never there in the Army but I have been in some pretty hot, arid, semi-desert regions for long periods of time. Thirst can be a near constant problem and with a limited water supply we had to be very careful as to how much we consumed daily.
Among the various Lifesaver type candies I found that a small smooth rock held in my mouth often kept my saliva glands functioning, even that little bit helped a lot in keeping from having a dry mouth and an overwhelming thirst.
I kept that little rock in my pocket for years. Now, 40 some years later, I would almost bet that I still have it put away in a box on a shelf somewhere among some of the other things that I carried back then.
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Gum may help, but there is nothing in the world worse than being forced to sit next to someone who "pops" their gum for four hours.