I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: kickingandscreaming on May 17, 2016, 06:29:08 AM
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I'm in my second week of using the cycler. So far, so good. I do dry days so I empty out totally after the last dwell and then record my UF and then do a manual drain. I find it very confusing that some days the UF is high and the M-Drain is just a "wringing me dry," And then some days it's totally reversed. Makes no sense to me. This morning, my UF was a minus number (-165), now why would that be? Then the M-drain was 995. Why did all that fluid wait until the M-drain to come out? Some things I just don't understand.
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I find that the position that I sleep in makes a big difference. When I first started my UF was all over the place and not knowing about the manual drain I would just unhook. I start to gain weight and started to get worried. I learned from this site to do a manual drain at the end. This took care of the weight gain and I went back to my normal weight. Over time I have come to conclusion that the position I sleep in makes a big difference. Now at the end of treatment if my UF seems low I will do a manual drain and now all of my UFs are around the same amount. Hope this helps.
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Since my last fill is Ico it is pretty important that my last frain be very complete, so my Cycler program is set to 'Hold' after the last drain. This way when I wake up I can restart the last drain and the machine will not reset the drain counter. Since I am now vertical I drain completely, then I have to poke the machine to 'Bypass' to get to the Final Fill.
The Cycler uses maybe 160 mL from the bags to fill lines and prime the pump chamnbers. This tends to make us think our uF a bit on the low side. When I asked my PD Nurse about it she told me they already have this amount figured into their calculations.
Many times I have risen early and was verticle, sitting reading waiting for the Cycler to finish. When it finall did get to that 'Pause' I would disconnect and go make coffee, have a cigarette, and return. Rather than proceed to the 'Bypass' fill I have restarted the 'Pause' drain and noticed that in that 10 or 12 minutes from being already drained, that it would drain another 150 mL, more or less. Not always, sometimes only 10 or 15, sometimes 200. There never seemed to be any pattern.
Since I am always 'wet' I haven't tried to see just how 'dry' I stay during the day.
If you have any of the Baxter drain only bags, maybe it would be telling to attempt a mid-day drain. We could learn something. I suspect that it is not uncommon for the body to always attempt to keep a certain amount of liquid within the abdomen, sort as a cusion for the intestines to 'float' easier. Making it easier for the digesting foods to move and make their way through the length of the system. It may not be 'normal' for the abdomen to be totally dry.
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There is nothing in me to drain mid-day. When I do the initial drain (which there is no way to bypass) it always is at most 1 mi. and usually 0. It feels like a vacuum abortion to be sucked out when there's nothing there to suck out. You're a Guy so you wouldn't understand. That I-Drain is MOST unpleasant, albeit thankfully brief. I wouldn't want to subject myself to that mid-day also.
What I don't like about the idea that it's leaving a lot undrained--until I do the M-Drain-- is that the whole reason for me doing short dwells and dry days is so I don't re-absorb both solutes and fluids and sugar. Having so much remain in me until I wake up and stand and drain seems counter-productive.
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Isn't there a way for your clinic to reprogram your card so your machine does not do an initial drain?
I do 500ml during the day, which my body seems to mostly absorb because when I do my IDrain at night the machine only removes about 100ml or less. I'm seriously considering asking if I can lower the amount of my day dwell, since it is essentially not doing anything productive for me. I do need to keep a little fluid in my abdomen during the day. I am apparently smaller than most folks on dialysis, and I can feel the catheter laying against my bladder and other innards during the day, which is sometimes painful, if I don't have a little fluid in there to let the catheter float around.
I don't understand why you have to do a manual drain at the end?
Perhaps if the IDrain cannot be bypassed by the clinic, they could consider letting you dwell with 100ml during the day just so it's not so painful for the Idrain? My IDrain volume is set at 0, because like you, I was feeling like it was trying to suck out my insides. Even with it at 0 it will sometimes keep going and going, trying to suck out fluid that just isn't there. It really hurts when that happens, but I've found that it's no consistent with my machine. Some nights it drains barely at all, and others it will keep sucking at my insides for 30 minutes, getting NOTHING out.
One trick I've learned is this: Push the "Go" button to start I Drain, but don't open your set right away. Give it a minute or two, lie down, get comfortable, then open the set. It's not going to drain anything anyway, so leaving the set closed seems to shorten the time it takes for the machine to get the message. If you leave it closed for too long the machine will beep at you. Just open the set and it'll try again, but it won't go as long as it would if you open the set right away when you hook up. Also, if it gets really painful and there's nothing draining, I will pinch the tubing off so the suction breaks. That also seems to help speed up the Idrain.
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Isn't there a way for your clinic to reprogram your card so your machine does not do an initial drain?
Apparently there isn't. Not according to my nurse and to Baxter. It's gotta try to drain even if that means draining nothing. I will try your suggestion. Actually I have, by mistake, done that a couple of times. Pressed Go and forgot to open the transfer set. i don't remember if it helped or not. i'll try it again and be aware this time. Thanks.
As for why I have to do the manual drain some days (for a lot) and some days for very little, apparently it's all about position during the drain time. Doesn't make much sense to me.
As far as absorbing your mid-day dwell, that would be a problem for me. For a while I was getting lots of negative UF and my body was taking on fluids badly. Then I switched to shorter dwells and that stopped and now, knock on wood, my fluids are doing well and I'm getting good positive UFs. It remains to be seen in my next blood work whether I'm getting good clearance.
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Do you still urinate at all? I do quite a lot and I'm sure that I'm peeing out most of the fluid that's left in my abdomen during the day. Every time I do Kt/V I have about 2000ml of urine. I really don't see the point in leaving it in if it's not going to stay there and remove the bad stuff from my body.
So, they're telling you to do a manual drain after the final drain? I'm still not clear on when you do that.
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Do you still urinate at all?
i do. Last adequacy test I submitted 1800ml of urine. Don't know where it is now but will find out on Tuesday.
So, they're telling you to do a manual drain after the final drain? I'm still not clear on when you do that.
Yes. At the end of every treatment I am to do a manual drain and record that along with the UF as reported by the cycler. Some days it is a lot and some days not as much, but there is always a significant amount that comes out in the manual drain. Don't understand why, really.
I don't want to retain ANY that I don't need as I'm Type 2 diabetic and the absorbed sugar is not my friend.
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So you're Cycler is showing 'End of Treatment' and then you down arrow through options to 'Manual Drain'?
My Cycler is programmed to 'Hold' at the end of the last drain. This way when I get up (vertical) I hit Stop then Start which continues that last drain. I drain far better, more complete vertical than laying in bed. When that last drain does finish again only then I have to arrow down to get to my last fill using the Ico.
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So you're Cycler is showing 'End of Treatment' and then you down arrow through options to 'Manual Drain'?
Yes. I then arrow down to get the recorded UF and then on to manual drain during which I stand up and drain out the rest that didn't drain out during the final drain cycle.
But this morning, I woke up JUST as the last dwell was finishing. I sat on the edge of my bed during the whole drain out. Then I did a manual drain. The numbers I got were totally confusing:
As I watched, the final drain registered 2937ml I said to myself, "Wow, that's a lot of UF for one exchange based on a fill of 1600ml."
Then when I arrowed down I expected to see a very UF number. But instead was shown just 1103ml.
Then I did the manual drain and got another 47ml.
My understanding was that the last (auto)drain I was watching reflected just the last exchange's UF which, according to 2963-1600 number would be= 1363. But the total UF for the whole night of 4 exchanges came to less than that (1103+47=1150)
So is this last auto-drain the UF for the whole night all in one lump. Does the cycler save all the UF and drain in one fell swoop at the end of the therapy? Or does it drain out as it goes after each exchange? I can't seem to make sense of this.
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I agree. Like you the numbers do not seem to add up.
A number of times I poke the machine so I can see the volume change as it is happening. A number of times I have watched the drain volume count up and shortly later after finishing treatment and taking the numbers to log I see that number reported LESS than what I saw a few minutes ago. It sometimes seems like the machine has forgotten. I really don't think that happened. More likely I just do not understand what the reported numbers actually are.
I mentioned once before the fill and prime volume is NOT recorded. When doing your calculations yourself instead of using the total volume of all the bagss you need to reduce that by the fill and prime volume. For my machine using the three prong cassette and three bags that is very near 160
As long as you are not retaining water, gaining weight, swelling, then the system is doing what it is intended to do. Try not to sweat over the details. That can be tough for some of us as the scientist in me wants to know exactly what, how, and why the process works.
I just write down the numbers and leave it at that. Though some days I do have to wonder because it sure seems like a small uF, but then againm some mornings my uF seems much larger and I can't tell before hand what it would be. I don't 'feel' heavier, or wetter, when connecting the night before. I really have no choice what my uF will be, it just is.
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A number of times I have watched the drain volume count up and shortly later after finishing treatment and taking the numbers to log I see that number reported LESS than what I saw a few minutes ago. It sometimes seems like the machine has forgotten.
This part is pretty typical. My nurse explained that at the very end of a drain, the cycler shoots in some fluid and then "decides" that you are done draining. So the number goes down a bit at the very end before "Please Wait."
The rest is, as they say, "a mystery."
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Are you set up on a Tidal routine?
I switched to that because I apparently have sensitive insides and the suction from the complete drains in the middle of the night would wake me up. What Tidal does is not completely drain you until the last fill - so it does add up.
I've got almost the same amounts as you - I fill 1500 and my last drain on Tidal can be as high as 2500.
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I don't think I'm doing tidal. At least my nurse has never used that term about my program. But I have been awakened by an uncomfortable drain here and there in the middle of the night. Because I'm a high-average transporter and because, as a diabetic, I'm so obsessed about not spending an extra minute filled with sugar, I think it's important that I be drained as much as possible each time. So I'd be surprised if the fluid is "intentionally" accumulating from fill to fill. But I'll ask about the tidal part.
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I too am on Tidal as I do not drain near as well while laying in bed as I do sitting or standing vertical.
For this reason I wouldn't be surprised to learn a great number of Cycler users are on Tidal.
You can scroll down through the Cycler settings most any time. I would not recommend you change any setting without discussing it with your PD Nurse.
I feel your ? I need to search for the right term. Intense fear of sugar exposure is a bit extreme. Even though you are currently not using insulin you are doing an excellent job of maintaining your blood sugar levels. You are a bit too harsh on yourself. The actual amount of sugar absorbed during dialysis can mostly be burned off with a daily walk. The large muscles of the legs use the most, far more than any other muscle group in the body, so walking does lower blood sugar measurably and in a short amount of time. Even a 15 minute walk can drop sugars 15 points.
This is one of the reasons I get outside doing things in the garden and yard. Not only does it give me something productive to do, it helps control my sugars, as well as my weight, and greatly contributes to my over-all health.
But I'll bet you know all this already. What do I win?
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The other bit of TMI advice I can think of is to empty your bowels as best you can before hooking up. I've noticed that even if I'm... let's say in the process of digesting... and anything is in my colon, I notice 1. more draining sensitivity and 2. lower drain amounts and longer drain times. Something about the nooks and crannies that are created with your intestines make for more hidden spaces for the solution to accumulate.