I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: rayray73 on March 10, 2014, 10:44:08 AM
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Are you on fluid restriction? or follow a specific eating diet?
I don't have any fluid restrictions, or have to follow a specific eating diet at the moment. I still pass urine, about half of whatever amount I drink. But I feel like I won't be getting a kidney for a long time, since I found out several weeks ago, I'm only 22% compatible with every kidney that has ever been donated. They said my blood group is not very common.
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Are you on fluid restriction? or follow a specific eating diet?
I don't have any fluid restrictions, or have to follow a specific eating diet at the moment. I still pass urine, about half of whatever amount I drink. But I feel like I won't be getting a kidney for a long time, since I found out several weeks ago, I'm only 22% compatible with every kidney that has ever been donated. They said my blood group is not very common.
I'm not yet. It sounds like I'm about in your boat.
Historically I've been a HUGE water drinker, if a waiter keeps filling my glass I keep drinking up, the last 24 hour test I ended up having two containers and maybe even still lost some! So I'm fearful of entering the fluid restriction zone. But I do think that my urine volume is visibly decreasing these days - I don't have the power that I'm used to. I'm hoping that my body is decreasing the desire for liquids, and that will make the transition easier...
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I drink pretty huge amount of fluids as well. One time when I was on dialysis, they used a machine to check the amount of extra fluid I had in my body. The nurse told me I had no extra fluid in my body, so they had to take me off dialysis early.
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I don't have restrictions either and drink a lot, including stuff like cokes that I shouldn't but my numbers are all great. I urinate everything I take in as far as I can tell. I only do 2 exchanges on CAPD a day and last test I had a KT/V of 4.3.
I have been on dialysis for almost a year. Though I'm on CAPD now, the first few month's last year I was doing in center hemo and it was a constant battle when they would hook me up. If I ate late the night before, which I do a lot, I would weigh a bit more and all but one of the techs refused to listen to me that the extra weight was a later dinner or snack the night before. After all, I have ESRD so I must be retaining fluid. I was leaving feeling bad and with cramps.
Hopefully things don't change, especially since I intend to return to work this year which is outside.
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I've entered the final phase of fluid restrictions (which ironically is caused by hemo dialysis). I think everyone would go through the stages with this topic as it is probably the hardest part of the disease. I too went from 4 litres a day to 1, and it was hard, and it took sacrifice, but it was worth it. While the metabolic effects of dialysis are different for everyone, in my country the goal is to keep all patients to <2litres per session. Now in reality with 3 sessions a week for in-centre that's a tough call. But I have seen those that really fail and I mean 4+ litres over each time have to go into surgery for pacemakers due to the constant pressure on the heart from extracting large quantities of water over a short time.
So I decided the effort to change was probably in my best interest.
Here are some tips that helped me - by the way my average is 1.6L per session (every 2 days) with no meds to force remove.
1) Get rid of that salt. The modern world consumes salt like its a drug, and in fact it almost is. Salt helps the body regulate blood pressure. The higher the concentration the more the brain demands fluid, why because its a basic sign of dehydration that the brain cannot ignore. Problem, we dont pee, so the other side of the pressure regulator is broken, thus pressure increases until either its relived or something pops.
I've removed as much sodium from my diet as possible. I did 2 months of sodium denial and came our the other end disliking salt. It helps that my wife is supportive and where possible replaces salt with something else.
2) The half cup rule
Who can make half a cup of tea? I cant, so make a whole one and tip half out. That way the 4 hot drinks I have at work are only 2.
3) Less milk
For some reason milk makes me thirsty, especially in a coffee. I avoid latte's
4) Find smaller cups/glasses
Some cups are huge, so I only use the smallest ones that are around 200ml, but my target is 100ml per serve
5) Fruit can be a great way to relieve thirst, just dont go for watermelon (obviously)
6) Lastly effort, do you really need that drink? might save you 200ml each time you make that call.
Any why do we do this? Well my testing has shown (for me) that those darn docs were right <2litres has a massive difference on the amount of metabolic change and the impacts thereafter. The difference is so impressive that it changed my personal and professional life. I'm naught and profile UF for the first 2 hours, but it means the last 8 hours can be as low as 100ml per hour.
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I'm on PD and do 4 exchanges a day pulling off an average of 350 ml each exchange. That's in addition to the 2000 ml in the bag. A daily average of 1400 taken off.
I still pee, but only maybe a 1/4 or less than I did years ago.
My team tells me I need to drink less, but my mouth and throat get so terribly dry that I HAVE TO get at least a mouthful of cold water from the refrigerator and hold it, swallowing about three times til it's gone. 30 or 40 minutes later I'm back getting another drink. May be need an ice maker at home so I can suck on chips all day.
I have to use the 2 1/2% solution to pull off this much water and have become diabetic since starting PD last May.
If I could get this thirst cured and not drink so much maybe I could switch to the 1 1/2% bags and reduce my sugar intake from dialysis.
Dr already has me on icodextrin for the nightly long dwell exchange, which has reduced my sugar intake during that exchange. But my blood sugar still keep creeping up.
I haven't noticed a problem, but the Dr's get bothered by my sugars.
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You have to do what works with your body. The hard part is adapting to the changes. But the sooner you change the less pain you have to handle. I'm on high dose CAPD. I do one drain/fill during the day, and go on the machine for 10 hours at night. I feel great, but it cramps my style. I do it gladly, though, because feeling good is good enough for me.