I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: roybear on April 13, 2006, 12:42:49 AM
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I have a bit of a problem. My nephrologist is always trying to get me to come at least 4days/week.
The reason being, is that I have a fluid gain problem. I normally gain about 4.5 to 5kilo's. I try to
keep it less than 5. However, I do have a tendency to gain up to 6(today I was 6.7) I have been
able to usually get it all off with no problems. He still pitches a fit whenever I get over 5.
I just wonder if he can force me to come in 4days. Maybe go through my insurance and tell them
I am "non compliant". I know the weight gain is not good, but habits are hard to break. I am
doing the best I can. I do not want to do 4days because I have other family obligations and as it
is now, I only have 2days each week to do "roybear" stuff(which includes the family obligations).
My dietitian when I first started dialysis said that I should try to keep the weight gain down to
3% of my body weight. I told the Dr. that and he about had a cow. He said no more than 2kilo's.
He did seem to be satisfied when we compromised with 2%, but would still prefer the 2kilo's only.
How much do you folks gain between treatments? Am I the only one having such a hard time with
fluid gains? Before I got sick, I would get off work, shower and watch a few t.v. shows. I would
have a quart jug of water. I would drink and refill it up to 3 or 4 times a night. I do not do that
now, but I still put on alot of fluid. I am getting better, it is just taking more time than I thought.
Thank You,....Everyone, please be careful!!!!
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Sometime if I dont watch what i drink, i'll gain upwards to 5kg...but thats the max I can take off. Anything over 5kg and I have to leave it for next time or else I'll get cramps and my pressure will drop. I usually try to keep my goals around 4000 (4kg) and that usually works well for me.
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I usually only put on about 2 kilos during the week once some times even less. I go to dialysis MWF once in a while I gain a little bit more but on the week ends I usually gain about 3. so generally speaking I guess its about one kilo a day.
I have trouble if I try to take off any more than 3 kilos at one time.
I am extremely careful about my fluid intake. It's not easy but I figure if I don't watch it the only one that pays the price for it is me.
I want to be around as long as possible so I try my best to behave.
The hardest part is when I go out to a family gathering or some thing like that. I mean here is every one having a good time and there I am with the same glass of tonic or what ever for the whole day.
My dr. was always trying to get me to come in for extra dialysis because he said I could get my weight down more but I know I was at my dry weight. As far as I know they can't make you go more than you do.
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I think alot of it is in how you are built and what your body does with the fluid and where the body stores it. Seems to me people who store fluid in the legs have more problems taking off the fluid than those of us (me included) who store it across the belly. I am sure body weight also come into it. I am a big girl and can take off five kilos pretty easily. I would prefer to take off less, but the machine and I have a kilo or two difference when I try to take off just what I put on. I always add a kilo or half a kilo to calculate what to take off each time. It feels like a race within the body to see what can come off.
Soo. On your marks....set....go...!
I don't think your neph can make you go more days. If your blood work is compliant and your KT/V is alright then you are being compliant. Let him see you are managing your diet and blood work and are coming to dialysis regularly. He should then be okay with what is happening. (P.S. Try to stay out the hospital, too.)
Katherine
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roybear
Your nephologist can not force you to dialyize more ofter. But if you are fluid overloaded I would think of doing what they are saying
Being overloaded with fluid is a very dangerous thing to happen to a renal patient. Please just try to cut down what you drink, try ice cubes, small sips smaller cans I have 150mls cans.
I have been a renal patient for a long time now, unfortunately I have seen a lot. Being fluid overloaded is a Killer for a renal patient, i have seen it to many times. It puts a lot a stress on your heart, out of breath when you try to walk, high BP.
I know how hard it can be to try to cut down on drinking. Now I am never more the 2kgs up even on weekends. It took me a long time to get used to controlling what I drink. If you want to do "roybear" stuff. Please use this as a wake up call. You must cut down on your drinking, habits can be broken.
PLEASE make sure you break this habit. I am sure you will :)
Sorry I can not be a bit more positive. I have seen to many bad things happen to renal patents who are overloaded with fluid. Remember it is up to you roybear!
Thinking of you.
Kevno
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It is sooooo hard to cut down on fluid... sometimes I dream of being able to drink everything in sight... I use the 500 ml water bottles to keep track of how much I am drinking, partially frozen then the ice lasts longer in your mouth and seems to work for me.. I generally have targets of around 4.. but I know I can handle taking that much so that is how much I allow myself.. yep, weekends are the hardest.. :o :( ;D
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Make sure to watch your sodium intake. That is what makes you thirsty. I know it is hard, and I love just a bite of salty food once in a while like a chip once in a while or two or three! ;D
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I have a bit of a problem. My nephrologist is always trying to get me to come at least 4days/week.
The reason being, is that I have a fluid gain problem. I normally gain about 4.5 to 5kilo's. I try to
keep it less than 5. However, I do have a tendency to gain up to 6(today I was 6.7) I have been
able to usually get it all off with no problems. He still pitches a fit whenever I get over 5.
I just wonder if he can force me to come in 4days. Maybe go through my insurance and tell them
I am "non compliant". I know the weight gain is not good, but habits are hard to break. I am
doing the best I can. I do not want to do 4days because I have other family obligations and as it
is now, I only have 2days each week to do "roybear" stuff(which includes the family obligations).
My dietitian when I first started dialysis said that I should try to keep the weight gain down to
3% of my body weight. I told the Dr. that and he about had a cow. He said no more than 2kilo's.
He did seem to be satisfied when we compromised with 2%, but would still prefer the 2kilo's only.
How much do you folks gain between treatments? Am I the only one having such a hard time with
fluid gains? Before I got sick, I would get off work, shower and watch a few t.v. shows. I would
have a quart jug of water. I would drink and refill it up to 3 or 4 times a night. I do not do that
now, but I still put on alot of fluid. I am getting better, it is just taking more time than I thought.
Thank You,....Everyone, please be careful!!!!
To answer your question Absolutely NOT, the doctor can not make you have more dialysis. It is your choice 100% if you want to just go 1 session a week it's your choice. And don't worry the insurance won't drop you for being "non compliant".
- Epoman
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The truth is, I take this fluid thing very seriously. I can never forget Jamie's lasts posts on December 31, the day before he died.
One weekend some months ago, I had 5.4 and they were not able to take all off. Since then I have been compliant, and usually have no more than 1.2, .8, etc. In fact they took down my dry weight. Last week I weighed .5 less than my dry weight.
I realise that I am feeling better these days than when I used to have a lot of fluid to take off and I want to keep it that way. I have been through the low blood pressure, dizziness and cramping bit, and I want no more of it.
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You are a U.S. citizen are you not Roybear!? You have your rights!!
You have the right NOT to listen to medical people. You have the right
NOT to be healthy. You have the RIGHT to develop cardio-vascular problems
earlier than you otherwise might from huge fluid fluctuations & short dialysis.
YOu have the ABSOLUTE RIGHT not to remain alive, should you so choose
(tho NOT by euthanasia, apparently :o ::) )
...me personally, I'll take a few restrictions & a lot more dialysis (total of 32hours
a week), to extend the length & quality of my life. ;D
Maybe you should ask your Neph if you can get Home Haemo....3 hours a night
on an NXStage, for e.g., is not such a hardship. Dialysing while watching MOnday
Night Football or Sex in the City or whatever wouldn't be such a hardship or impingement
on "Roybear time" would it?? ;)
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The neph at my center is an idiot. He has often given wrong meds to other patients. I watch what he does to me very carefully. Besides what the heck can he know about me when he comes in and say "Hi. How are ya? Anything ya need from me?" ? I don't need anything from him ever. If he tries to raise my dialysis time I will have a conniption fit. I barely make the four hours now as it is.
Katherine
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I have a bit of a problem. My nephrologist is always trying to get me to come at least 4days/week.
The reason being, is that I have a fluid gain problem. I normally gain about 4.5 to 5kilo's. I try to
keep it less than 5. However, I do have a tendency to gain up to 6(today I was 6.7) I have been
able to usually get it all off with no problems. He still pitches a fit whenever I get over 5.
I kind of think you should be glad that your dr. cares enough about you to bug you with that stuff. Some dr. really don't care enough to tell you more than once. :(
I've had dr. like that, I got rid of him really fast.
I like the dr. I have now. :)
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Well said kevno. It is very easy to overload yourself, and although it might be easy to take off, it doesn't mean you body likes it. I do have a problem with fluid intake, and reading this forum and hearing about people dying, its only made me want to try even harder. At the moment I average about 3.5 litres. And because I'm on nocturnal, it is harder to follow the restriction because its basically like you are always on your 2 day/weekend break. I do 40 hours per week, and you are not aloud to take off any more than 400ml/hr. So if you overload yourself, you can run into a problem. Like I have at the moment. In our little book that the dietition gives us, the restriction for HD is actually supposed to be 500ml+output per day. I don't think I could do only 500 a day. I get so thirsty at each meal time and like to have a small drink with meals, as it helps with the thirst.
Today I have kept it down to 600ml woohoo!! I may have a cup of tea before bed. I certainly don't want to die young, and I don't want any other problems either. I think we should encourage each other with this. I know this is an ihatedialysis website, but its not going to help telling people to not listen to the doctor and do what you want.
I personally think, if you are offered extra dialysis, take it!! I do the Maximum amount of HD, and I wont ever go back to 15 hours a week. The difference is definitely significant.
Take care of yourself roybear :)