I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: kickingandscreaming on June 24, 2016, 07:54:16 PM
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On the cycler, at the end of PD, I down arrow and the machine tells me the Initial Drain voiume, then the UF and finally the Manual Drain volume. As I've commented before, sometimes the UF is low ans the Manual Drain is high. And vice versa. So which figure(s) represents how much extra fluid was removed during the night over and above what was pumped into the peritoneum?
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Your UF is the additional amount. If you're like me, it's usually around the same amount every night unless I'm naughty with my diet.
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I don't know the reason, but many times my initial drain is much lower than normal. When this occurs the machine reports my uF as much higher than normal.
I suspect that it was a drain problem related to my body position. For example, if very tired and I lay down during the initial drain, guaranteed it will be a smaller drain as I am not vertical. But this has occured a number of times while I have sat here on the computer or reading a book, so it isn't only laying that somehow restricts the initial drain. Reading and using this laptop I tend to 'hunch' over a bit. Not good body posture, and this slows the drain. In fact, the Cycler has alarmed on me if I slouch too badly.
I try not to rely on a specific uF as the weather, amount of activity throughout my day, how much I sweat, as well as how much I intake, all have a part in determining my uF for that day. Over time you will begin to see a general pattern, a range from which you can soon determine your 'normal' range.
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But how do I arrive at the figure? Is it the UF that the cycler tells me at the end of therapy? Or is it that number plus the amount in the manual drain? There's a big difference between the two on many days.
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Possibly. It depends on what all is contained in your manual drain. Are you holding, or filling with any solution before that manual drain?
If you are not having a 'Last Fill' and leaving fluid in when you end treatment on your machine and sometime later in the day doing a manual drain then that fluid is all uF.
If you DO have a 'Last Fill' on the machine then you would need to subtract that volume from the manual drain, the remainder is uF.
In my case, my Last Fill is with Ico, 2 liters. If I were to manual drain anytime prior to connecting to my Cycler then I would have to subtract 2000 from that drain volume to get my uF. Later connected to the Cycler my initial drain would be very small. but my uF during the night should still be within my 'normal' range.
Does this help clarify things?
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I have no last fill. Just a final drain. And then a manual drain at the very end.
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I'm on a different machine than you, so it may be different.
The way mine works is that my initial drain is not included in my total UF, but it does record the amount in the record separately.
So, I have a last fill of 1500. Typically, my initial drain is almost exactly that - unless I had that extra cup of coffee in the morning. Then, I have 4 cycles of Fill/Dwell/Drain. Then my last fill. Whatever is UF'ed from those 4 cycles is my total.
I have a paper record I fill out in addition to the machine backup, and there is a section for the first/zero drain (as they call it at my clinic) and the total UF.
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Thanks, Fabkiwi. I also fill out a form each morning but it breaks it down into Initial Drain, UF and Manual Drain. Initial drain fo me is usually <3 as i begin and end dry. So I guess my total UF is UF + Manual Drain.
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It's confusing! Occasionally I'll have a manual drain in the middle of the day if I'm feeling too full. Then, I have no idea what to do with that information, either. My machine will ask if I had a manual fill - and record that if need be - but nothing for the drain. I usually just make a note on my record sheet with the amounts. But, none of the nurses ever really seem to care about that, so idk....
It seems to me, and I'm sure this varies from clinic to clinic, but my team seems less concerned with the actual machine dialysis records and more focused on the numbers in my labwork and whether or not I'm puffing up like the Pillsbury Dough Man.
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Fabwiki, I'd bet you are more right than you know.
My clinic seems far more interested in my weight, amount of leg swelling and labs than anything else.
How you are feeling is one of the most important factors.
Now if they could just do somoething for this constant tiredness I'd be almost fine.
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Occasionally I'll have a manual drain in the middle of the day if I'm feeling too full.
To tell you the truth, almost every night I am tempted to just empty out during a dwell. Every night I am awakened by the feeling that I can't breathe because I'm so full. It makes me crazy and it is wrecking my sleep because it's becoming a pattern. I have even changed my meal timing and pattern so that there is not a trace of fullness before i start PD at night. If I eat dinner at my "normal" time and normal amount it makes me feel like I'm going to explode. I'm now eating dinner much earlier and lighter. And I still feel like every night is too-much-thanksgiving-dinner-night. I'm not on tidal, but the cycler is set to stop draining at 90% (used to be even worse at 85%) allegedly to prevent lots of low drain alarms. Recently because I had been being under-dialyzed with my former prescription, a cycle was added and each cycle was shortened and the fill was increased by 200ml. I hate it. I have asthma, and the feeling of not being able to breathe is very primal to me.
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That is one of the "perks" of being so petite (I'm 4'11 and dry weight is around 115). I was doing a full 2000 fill to start and my neph freaked out at my nurses because of the hernia risk. You could ask your team about that... if you're waking up because of it, it sounds like something should be adjusted.
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Good point Fabwiki.
Being a larger person I nevere think of the pressure a fill can create on a petite person. I don't doubt it may be a lot like a tight water balloon. It would take much to make if go 'Pop'! Utmost care must be taken.
K&S, have you talked to your team and stressed how much pressure your fills are creating? It is possible to reduce the fill volume and increase cycle, shorten the duration of each so to remain near the same total time connected. The whole point is to detail the program to work for you, to stay comfortable yet still dialyse adequately and effectively.
For sake of arguement, or example, whichever seems more applicabble. The fill could be dialed back to 1200 and drain 95% of that. Total volume will be divided by that fill volume to determine the number of cycles, and the total time then devided by that number of cycles to determine the dwell. It will work. You just need to guesstimate the fill volume your are comfortable with and figure the program around that. NOT a problem. Have a serious talk with your Nurse and see what adjustments can get done.
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It's not just the fill volume. It's all the fluid the fill accrues as it picks up UF. I now fill with 1800 (up from 1600) but I happened to wake last night during fill 3 or 4 of 5 (can't remember which) and saw the volume reading as 2,550. So that's an increase of 750 over what I filled with. That's a lot. I'm not a petite person as Fabkiwi is (I'm 5'4" and large boned and overweight) but that doesn't mean my peritoneum is big. I just hate the feeling.
I'm already doing 5 short (1hr/30min) exchanges over 9hours/30minutes. With 90% minimum drain volume (up from 85%). I think my PD nurse as a bit of sadist in her. I don't think she's a naturally compassionate person. A good and knowledgable nurse, but not an empath.
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That 10% residual can add up over many exchanges. Need to ask about lowering the fill volume and increasing the exchanges, reducing the time for each. You should end up with the same overall solution used, and the same time frame, just a lot lest abdominal pressure. Be more comfortable. It should not wake you unless like me you have a restricted drain and the machine alarms so I will turn a bit and drain better.
I can tell how my night went when I get up early and see how short my last dwell is. The machine will shorten it so to end at the same time. At the end it gives us an average dwell time we record on our log.
You still need to have that talk with the Nurse.
Good Luck with that. Hopefully she will be understanding and willing to help make the adjustments to your program.
Take Care,
Charlie B53
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Unfortunately, as I read in some research article somewhere, if you only do short exchanges (which I need because I'm a high-average transporter) the risk is a build up of amyloid (not good) that doesn't get cleared in short exchanges. So I don't think I want any shorter ones than I already have.
Here's how I've analyzed the issue. In the last month, since beginning the cycler I have gained about 4kg of weight. Since it's unlilkely to be "real" weight everyone is assuming it is fluid weight that I'm "hiding" in my heart/lung area. So my exchanges were switched from alternating green/yellow to all green. Since my weight has begun to drop, last night I switched back to green/yellow. And I had a much better night as it didn't pick up nearly the UF as will all green. It wasn't enough to wake me and I wasn't uncomfortable. I've also changes some of my eating patterns because I don't agree that this is all "hidden" fluid. I think I'm still taking on a lot of sugar from the dialysate. Not enough to screw with my H1c, but enough to pack on pounds that i don't need or want.
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I also use one green and one yellow, usually. There are days that I end up gaining far more water weight possibly the lack of being outdoors sweating, or eating wetter foods, perhaps even drinking a little more than my normal. Those nights I will use two greens.
I think this option is great. We have the ability to 'tailor' or treatment to better fit our needs.
You are on the right track. So many of our young people today lack the common sense that we had learned so long ago.
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Because the surgeon placed my wife's PD catheter in a vertical position (tube exits just below her sternum), our Baxter cycler never can drain her dry prior to going on the the fill cycles. In most cases the initial drain ends with as much as 400 ml of fluid left in her. What I have done to prevent a situation where this can happen is by upping the minimum drain alarm on the initial drain to 1,400 ml. I also sit by the cycler on that initial drain and once we pass 1,400 ml, I watch the cycler to see when it flips over to fill. I keep the drain screen on as the initial drain takes place so I know exactly where she is when the machine flips to fill. At that point I stop the cycler and scroll down to manual drain. Every time the cycler stops due to low flow, I restart the manual drain. Eventually I'll get that extra 400 ml off. The Baxter cycler however does not add the manual drain number to the initial drain count. So for the records I record the initial drain amount on her logs, then I will add the manual amount and record the real total "initial drain".
For the final drain I do the same exercise. In this case I set her minimum UF to 200 and will be present during that final drain. If I see less than 400 in the UF count and we fill to final fill, I'll stop the cycler and again scroll down to manual drain. I'll monitor those subsequent drains. When I get what I think is sufficient amounts out, I'll press go and the cycler will go to the final fill. Unlike the initial drain, the cycler will add the final manual drains to the total UF and will display that UF in the final numbers that can be displayed at the end of the dialysis cycle.
While we do a lot of manual drains at first and at the end, we find that by my wife changing positions in her bed can move out the pockets of fluid that remain but don't come out easily due to the catheter placement in her body. I have to tip my hat to the folks at Baxter support who helped me learn the nuances in draining with the cycler that allowed us to maximize the UF and to keep her comfortable and not overfill her. The machine is smart but it works on a volume of fluid moved over a period of time. It's easy for the logic to get fooled and the cycler has no way to determine someone who is drained from someone who drains slowly. Dependent upon the UF settings of the machine, it may consider you drained when in essence you still have significant fluid in you. I've made changes in those settings from the original programming to make sure we get all that fluid out. Once I explained this to her PD nurse, she made changes in the programming to accommodate our drain requirements.
Jack
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Unfortunately, as I read in some research article somewhere, if you only do short exchanges (which I need because I'm a high-average transporter) the risk is a build up of amyloid (not good) that doesn't get cleared in short exchanges.
If you can find a link to this information I would like to learn more.
I suspect a bit of misinformation here. Elements do not have awareness of dwell time. TOTAL dwell time is the real answer. Individual dwell periods, even if of short duration all add up. Total time of dialysis is the requirement to remove elements.
This is also the argument for longer hemo, either more hours per session or more days per week, making for more TOTAL dialysis.
9 to 10 hours is a very common Cycler run time for MOST people. Your labs are the best indicator at this point.
Rate of flow during drain is a problem that I have laying flat on my back. This is why my Nurse programmed my Cycler to hold on Last Drain, so I can get up (verticle) and continue that last drain to get the last couple hundred units out before going to my Last Fill.