I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Aaron on July 07, 2009, 12:17:30 PM
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Hi all. I am somewhat unique (just like everyone else) in that I still produce as much urine as I ever did. Consequently, I have to fight to keep from getting dehydrated during, and especially after dialysis. And if that wasn't enough, I also shift fluid quite readily, so what would keep an average patient even does not keep me even. I am always set for the minimum, I get the prime and the rince back, and usually another 400 ML of fluid through the machine on top of that. But I still leave feeling terrible. I feel great when I come, but I feel terrible when I leave.
I suspect the reason I am feeling bad is the changes in my fluid levels. Does anyone have any suggestions? Is there any way to get the filtration of dialysis without the fluid removal?
I dialyze in a center for 3 hours 3 times a week, though we are considering making that 2 times a week, depending on what my labs say.
Thanks in advance for any help with this.
Aaron
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Ken posted this just today. Hope it may be useful.
For the two years I was on the cycler I used the weakest bags over an 8 hour period and got an average of 275mls. This doesn't seem a lot but I still pass a lot of fluid and my adequacy was 2.7 which the capd clinic said was way above adequate.
Now I'm on haemo I don't allow them to take off any UF. If my kidneys are eventually going to stop producing urine I'd rather it start naturally than let the haemo accellerate it.
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Hi Paul (and Ken if you see this).
It was my understanding that it wasn't possible to dialyze without taking off some fluid. Apparently the machines at my unit can't be set to remove less than .9L or so, or else they start beeping all the time. And even if you go below .9, I think they only allow you to set them to .7 or .8.
I have also tried PD, but I wasn't getting good enough clearance, and I was having some pretty serious intestinal issues.
Thanks for your reply.
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I am just sharing what i read today. I havnt started dialysis yet so not sure about the ins and outs. But im sure others will be able to answer you a little clearer.
Ken also has done both PD and hemo.
If you click on the home page button and scroll to the very bottom you can click on peoples names and read there old posts. Maybe if you click on kens name he mentions more of how he does his hemo??
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Aaron,
Have you looked into doing home hemo with NxStage? You CAN set the machine for no UF. Since there is a .3 rinse back, we usually do a .3 UF to accommodate, but rarely pull more than that. My husband still urinates, too.
Aleta
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have you asked them to adjust your dry weight?? seems like tpo much is coming off. Can you drink something during treatment. my hubby often had the same problem with the shifting. he found being able to drink helped. He's on home hemo nocturnal now and no more problems with fluid shifting.
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I'm watching for answer to you Aaron, as I have a similar problem. The most than can get off me is a fraction (about .7) and that makes me goofy. I was told to eat lots and I'm trying (low phos, pot, etc.) and gaining a little weight and have trouble convince the techs it is real honest to goodness fat on me. Of course the nurse always checks and knows to try 1 kilos but always comes back and changes it. Hope you get some reasonable answers.
By the way, welcome. :welcomesign;
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I'm watching for answer to you Aaron, as I have a similar problem. The most than can get off me is a fraction (about .7) and that makes me goofy. I was told to eat lots and I'm trying (low phos, pot, etc.) and gaining a little weight and have trouble convince the techs it is real honest to goodness fat on me. Of course the nurse always checks and knows to try 1 kilos but always comes back and changes it. Hope you get some reasonable answers.
Good luck. I have basically come to the conclusion that I won't dialyze if they insist on taking off any more fluid than the absolute minimum. Fortunately, I go to a great unit, so it's never come up. I've had to do some fast talking to convince all the nurses and techs that I know what I'm doing, and most of them seem to be ok with it now. They are just worried that I might have fluid gain and not realize it. However, I pee too much, and besides, I think I will notice if and when I start to retain fluid. I'm guessing it should be obvious, though I could be wrong.
I know how you feel about the normal weight gain being mistaken for fluid gain. Last year, when I had the severe intestinal issues, I lost about 15KG in real weight. I've slowly been gaining that back, and it's required some more fast talking to keep them moving my dry weight up.
It's interesting that you mention that you feel goofy if you get too much fluid off. I personally always feel dumb during and after dialysis. My mental faculties are definitely reduced and I have barred my self from making any major decisions on dialysis days unless it's before dialysis starts.
I plan to check out the NxStage, because I'm sick and tired of feeling sick and tired after treatment. I don't know if the NxStage will help me feel better, but I'll try anything. Thanks Aleta for recommending that. I like what I've read so far! No fluid removal would be awesome!
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Wow! Three hours every three days a week is a very unique person on dialysis. I am doing 4 hours a three times a week and some days I feel great going in and if I'm really lucky I feel good coming out. Like Yesterday I was feeling good that they only took out 2 kilos which is .2 above my dry wieght which is 86.5. So, if they take off to much of my fluid than I'm drained to the max and the headache starts in. I think it's how much they take off in feeling good or feeling like crap. I also have the prime and the rince back so I'm glad I told them only to take off 2 at the most. I do produce as much as I can to urinate the only problem is that I do dehydrate fast especially during the summer days. I hope you get to do twice a week and feel a lot better during your dialysis and welcome to the site here. It's great to get questions answered and other opionions. Later friend, Rivy :cuddle;
Hi all. I am somewhat unique (just like everyone else) in that I still produce as much urine as I ever did. Consequently, I have to fight to keep from getting dehydrated during, and especially after dialysis. And if that wasn't enough, I also shift fluid quite readily, so what would keep an average patient even does not keep me even. I am always set for the minimum, I get the prime and the rince back, and usually another 400 ML of fluid through the machine on top of that. But I still leave feeling terrible. I feel great when I come, but I feel terrible when I leave.
I suspect the reason I am feeling bad is the changes in my fluid levels. Does anyone have any suggestions? Is there any way to get the filtration of dialysis without the fluid removal?
I dialyze in a center for 3 hours 3 times a week, though we are considering making that 2 times a week, depending on what my labs say.
Thanks in advance for any help with this.
Aaron
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Fluid gain won't always be obvious Aaron!!! It can hide in your veins, lungs, around your heart!!! You may not have any swelling. Hubby had over 25 lbs of fluid on when PD stopped working for him and he had very little swelling. It was in his blood vessels and on his lungs!! Hubby always knew ( and still does ) know when he loses or gains by his blood pressure. When he had the 25 lbs of fluid on his b/p was 230/130!!! Dialysis nurse told him that that b'p was ok for a dialysis patient!!
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Fluid gain won't always be obvious Aaron!!! It can hide in your veins, lungs, around your heart!!! You may not have any swelling. Hubby had over 25 lbs of fluid on when PD stopped working for him and he had very little swelling. It was in his blood vessels and on his lungs!! Hubby always knew ( and still does ) know when he loses or gains by his blood pressure. When he had the 25 lbs of fluid on his b/p was 230/130!!! Dialysis nurse told him that that b'p was ok for a dialysis patient!!
Thanks for this info. I guess I figured because I was a small guy that it wouldn't have many places to hide. I'll make sure I don't take it for granted that I'll know. Fortunately, my BPs are always good, and all of my weight gains are gradual. Still, I guess the lesson in this is never make assumptions about your health. :)
Thanks again for sharing that info.
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Could be the swing in the toxin levels as they are being removed.
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I'm a small guy and fluid tends to hide in me, so you can never tell. When I first started dialysis, extra fluid tended to stay in my legs, but a few months in it started to prefer staying in my circulatory system and elsewhere, like my lungs. When it was really bad and I had way too much fluid on me, my blood pressure was very high, my lungs filled with fluid, and I had swelling everywhere - even my back!
These days, I can tell when I'm fluid overloaded by my BP and how I feel in general. I'm working on it now (with PD) - when I wake up my BP is normal, but by the time I go to sleep, it's up to 140/95 or so. I'm trying to take off enough fluid now that what I consume in a day isn't enough to raise my blood pressure.
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I have the same issue. I may only gain .5 between sessions. I usually try to stay just at my dry weight and drink water during the treatment. I think of it as a blesssing because making urine makes the diet so much easier. I can tell the techs how much I want to take off, and the machines at our unit allow a minimum of .4 so I that makes it easier. Have you tried drinking a lot before treatment. I usually have 2 or 3 glasses of water in the morning to help avoild getting dehydrated, but you also have to make sure they challenge your dry weight regularly so you don't get hidden fluid. Good luck.