I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: jdy123 on April 17, 2009, 01:11:06 PM
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This is question that I don't want to ask my nurse because she'll get angry with me because I changed the program on my cycler. I hope someone here can give me some insight.
I am 5'1 and 130 lbs. I have to fill up 1400 ml for each cycle (8 cycles total) when I dialysize. Lately it has become EXTREMELY uncomfortable having so much fluiid in me. I would have to sit up in order to breath. Couple of nights ago, I was hyperventilating because I couldn't breath. I can only eat a very small amount at dinner so there is room in my belly for the fluid. The discomfort has caused me a lot of sleepless nights.
Last night, I changed the filled amount from 1400 ml to 950 ml. The machine automately changed it to 9 cycles instead of 8. In the morning, I had just slightly less amount of output as when I was using 1500 ml. However, I was so much more confortable and had a good night's rest.
So what is the reasoning for having to force all the dialysate into your body to point that you are going to explode? Will having less dialysate kill me?
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jdy123 - How long have you been on PD?
It took me 2 weeks to get use to the fill. I know too well the feeling you described. My first week I was on CCPD (cycler) with 3 exchanges through the night. Four nights I had to sleep prop up because if I layed flat, I couldn't breath. I told the PD clinic nurse my situation and they pretty much ignored me and said it's protocol. Well, that is not satisfactory to me. I took it up with my Neph. He took me off CCPD and started CAPD (manual) with 2 exchanges during the day (7.5% Icodextrin-morning good for 16hrs. & 2.5% Dextrose-night good for 8hrs.) I still had to fill with 2000 mls, but like I said I got use to it. Also, my Neph told me if I plan to be more active during the day (hiking, go to amusement park, etc.) I can opt to fill only 1500mls and make it up at night by using a stronger solution (4.25% Dextrose).
Talk with your Neph.
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Welcome Jdy123!
It's your body and you shouldn't have to fight with anyone about your treatment, but sometimes you have to stand up for yourself. ( I hate that you have to do it, because being sick is stressful enough in itself without having to fight with people over your rights...)
When I Started PD again, I was told that I would have to do 1.5 litres, and like you I couldn't breathe, I had to have 1.5 of Fluid during the day too. which made it hard to get to work as I was waddling like a duck! I was HUGE!
I asked my doc if I could TRY a lesser amount for a while and could they keep an eye on my bloods while I did it. I'm now on 1.2litres and nothing during the day and I'm a lot more comfortable! My bloods are fine and the dialysis is a lot easier.
Be reasonable but firm with them, after all it's your body and you need to rest at night, more than a well person.
Try and change your programme back for now 'cos anything less than a litre isn't really doing anything and will send your blood results through the roof, then they will think you're irresponsible and never let you forget it!
Be firm but fair with them and if they are anything like human (sometimes I know they don't seem it!!) they should give you back the respect that you deserve.
Good luck and keep us all posted!!
carla
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I don't know about your unit but mine doesn't have very many PD patients so initially all are put on 2000ml fills because it's what they've been told is the norm. But that doesn't really make sense to me because of so many different body types, sizes, weights and even the ability to exchange (I'm a slow exchanger so I need longer than normal dwell times). I think all of these factors should be taken into consideration when setting up a treatment plan. But in their defense, the nurses and doctors may not have enough experience with PD patients and feel more comfortable with staying with the protocol initially.
I agree that there is an adjustment period to get used to the amount of fluid in your belly but it does get easier. But there's nothing to say that things can't change with experience. If you've given it a fair trial, that I recommend you talk with your nurse and neph about lowing your fill amount although it might mean an extra exchange to two to get adequate dialysis.
I'm 5'4" and about 135 lbs and have learned to tolerate the 2000ml fill but only during the night. I requested that they let me try and be "dry" during the day. That way I don't feel like I'm lugging so much extra weight around and my clothes fit better too. I've been back on PD for 5+ years, I do 6 exchanges per night using a cycler and my blood results have been good enough that no one has ever suggested that I go back to a daily fill. Thanks heavens! I'd hate it.
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You should call your nephrologist. I hate that it seems like adults don't get the same kind of care that children on dialysis get. We can see our nephrologist (or one of his associates) any day of the week including weekends if there is an emergency. In fact, our nephrologist has told us to come in any time that it doesn't have to be a clinic day. They will work him in. And we are supposed to call the dialysis nurse on call anytime if there is a problem or if we have a question that can't wait. I can't tell you how many times we have had questions and had to call. I wish you guys got the same kind of care.
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One size doesn't fit all! We patients are different. The nurse should be working with you to determine
a correct amount of dialysaid, but I agree that you do get used to the fluid in your abdomen.
I have been on 3000 ml since I started PD because I am big, but the first week of carrying that much
was awful. I felt like I really was lugging around a spare time. Give it time, but watch your labs and make
the nurse work with you.
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This is question that I don't want to ask my nurse because she'll get angry with me because I changed the program on my cycler. I hope someone here can give me some insight.
I am 5'1 and 130 lbs. I have to fill up 1400 ml for each cycle (8 cycles total) when I dialysize. Lately it has become EXTREMELY uncomfortable having so much fluiid in me. I would have to sit up in order to breath. Couple of nights ago, I was hyperventilating because I couldn't breath. I can only eat a very small amount at dinner so there is room in my belly for the fluid. The discomfort has caused me a lot of sleepless nights.
Last night, I changed the filled amount from 1400 ml to 950 ml. The machine automately changed it to 9 cycles instead of 8. In the morning, I had just slightly less amount of output as when I was using 1500 ml. However, I was so much more confortable and had a good night's rest.
So what is the reasoning for having to force all the dialysate into your body to point that you are going to explode? Will having less dialysate kill me?
Well it wont do you any good thats for sure !! You dont say how long you have been doing dialysis? If you are a newbie you will get used to that full feeling , although it never goes away! The reason you are given an amount of fluid is because thats how much dialysis you need , then more fluid you have in you , the more efficiently it works. So although you may have had a little less output this time , if you continue to put less in ..you will get a little less out each time but this will build up around your body and you will end up fluid overloaded (and it can creep up on you!) Try sleeping propped up with more pillows till you get used to the feeling and just eat little and often , we all go through it !
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Hey Jdy, was just re-reading this post and wondering how you're getting on?
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The more fluid you put in, and the larger number of cycles equals better dialysis. It's possible you're not removing enough toxins or enough fluid. Have you had labs done since switching to 950 ml?
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My PD nurse encourages me to play with my settings to find what works best for me. I've started adjusting my setting nightly to accommodate the time I go to bed and the time I want to get up, and whether I feel like I can take more fluid or not. I don't know how he feels about this nightly fiddling, but it works for me.
I started on my cycler at 1200 ml fill, but now I'm up to 1400 or 1500. I figure I can pump it up even more when I don't need to pull off as much fluid, since I know I've drained in excess of 2000 ml at times with ultrafiltration - and with lower concentration fluids, I'll ultrafiltrate less, so I can hold more in the beginning.
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In my clinic they start everybody on 2000. It has nothing to do with what you actually need which is silly. They started me with 2500 because im over 6ft tall. I fought that and within 2 months or so had it decreased to 2000 because I felt like I was drowning. Since I have been recovering from this surgery I have been doing low volume treatments in order to let my peritoneum heal... filling with 1000ml 4 dwells per night and dry during the day. Okay.... with this drastic reduction in treatment, my kt/v last week was 1.76. They all say it is good yet they still want to take me back to 2000 and be full during the day. I really want to be treated versus someone giving me what they think the chart says I should have. My life is so much better without being full all day, and I have been feeling great with the Labs to back me up. We shall see, my next appt is next week.