I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: hookmeup on October 25, 2015, 08:36:43 AM
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Don't know what happened to the text of my initial message, but here's the problem. I do 5 exchanges each night. 1500 ML fill each time l and 1.5 dextrose. Total volume was 7500. I fill each time with no problem. On the drain, I usually got about 100-150 out before it stops draining, alarms sound and I have to stand up to complete the drain process. This, of course, meant that I was getting up for about 45 Min each two hours and then back to bed for some more sleep. I love PD, but this interrupted sleep was killing me.
I have had the catheter manipulated, had heparin added to the fill bags and saw the Kidney Dr. on Monday. He increased the fill volume to 1800 on each fill to see if that would make a difference (Not sure how that will help, but was willing to try). Now the drain gets to about 500 or 600 and then it again quits draining properly and causes alarms. I react to anywhere from 4 to 10 alarms nightly, depending on how sleepy I am. If I lie down too long, I have to deal with yet another alarm.
When I stand or sit the drain "fly's" out and it is a steady drain. That makes me think that the fibrin theory doesn't make any sense and was a total waste of my time.
Any suggestions or similar experiences would be appreciated I would really like to get some sleep again.
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Well i had nothing but problems like you are describing and lots of pain with the cycler so i had to switch to manuals.
Its not ideal but i do 4 exchanges every day and fill with 2000 ml. I too was being woke up constantly because i wasn't draining all the way and
they did an xray and said the tube was in the right spot and everything.
So they let me switch to manuals and i can say one thing is that i sleep well at night now and my cat likes it too
Now she can sleep with me again...lol
Oh and i have been on pd for almost a year now. :)
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I am so sleepy today after getting up 5 times to drain during the night. It is a little better since they increased the volume, but I only drain out about 500 out of the 1800 that goes in before I have to get up. It actually comes out at a pretty steady and fast pace when I'm in the sitting or standing position. I don't want to go back to HEMO if I can help it. I really like being able to do this at home and to be able to travel if I want to. I hope this gets better soon, just the thought of going back to the surgeon for repositioning makes me want to run!
This is the one bump in the road that is making me feel helpless.
Hope some other suggestions might help, I'm willing to try just about anything, :Kit n Stik;
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I really think it's the positioning of the catheter. My wife uses a Baxter cycler and is using tidal therapy. She's doing 15 cycles a night but her tidal volume is set to 50%. She is a slow drain and the only complete drains are the first and last. If we would allow the cycler to stop drawing on the first or last drains, she would overfill. I can get anything from 300-500 ml additional out of her by switching to manual prior to the first or last fill. Her cath runs low in her belly and runs vertical and exits just below her sternum. Those first and last drains take about 1 to 1.5 hours.
None of her PD nurses or her neph can tell us why the vascular surgeon placed the cath like this. I talked to Baxter support and asked how the cycler knows when to stop for alarms or to fill prior to complete drains. They told me that the unit is looking at rate of flow over 2 minute periods and 10 minute periods. If the flow in either time period falls below software specs, the cycler figures it's either done or to turn on an alarm.
Jack
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I am convinced that it is positioning too. It just doesn't make any sense that I can stand up and the drain speeds up and as soon as I lie down it stops. We went to have it X-rayed and they manipulated it a bit, but said they could not see any irregularities. The Neph. has suggested that we go to the surgeon, but I swear I have had so much surgery (the cause of this problem in the first place). I just don't want to go down that road again. I was hoping that it might be the settings on the machine or some other explanation. I don't buy the clogged up suggestion, if that were the case, it would not drain so well when I am in a standing or sitting position.
Thanks!
Still Sleepy in Memphis.
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I'm a bit late getting here. but, I'm on PD 2 1/2 years so far. Ever since starting I learned very quickly that body position made a great difference in how well I drain. On my back or left side I get alarms. I'm O.K. when on my right side. Far better when vertical, either sitting or standing. Because of these drain issues I am also set to 'Tidal'
I don't remember when, but long ago I learn whenever the three beep alarm wakes me to roll onto my right side and I immediately fall back asleep.
My Cycler is set to 'Hold' on the last drain so that when I wake up I can poke it to 'finish' that drain now that I am vertical.
So I have to ask, have you tried ALL laying positions? Front, back, left, right, to see if there is one that makes a difference?
For those that do better on one side, a 'full-length' body pillow may be a benefit, sort of a 'leaning post' for your sleep.
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Reading all this really freaks me out. I was supposed to do PD, but my catheter was very, very slow filling and draining and I probably need it reinstalled. I'm doing in center hemo with a chest cath until my PD cath. is sorted. But reading how many issues you all have with PD makes me wonder if it's a good idea. And it sounds so unbelievably complicated. I'm not at all sure I can do it.
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I agree with Charlie. Since I started position can and does make a difference. For me its either standing or laying down. If I am in a sitting position...forget about it...ALARM.. >:(
Also, from my center, I have heard it can depend on where the surgeon positioned the cath in the first place.
Stay positive and I hope they can get things figured out for you so you can do the dialysis in the way YOU are most comfortable with. Remember the saying....the hardest part is taking the first steps. We have all learned after the process has started as we are all indivivuals that need to find what works best for us.
I don't always get alarms doing PD.......but when I do >:( >:( hahahahahahahahaha
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I am not a PD patient. I do home hemo.
But one thing I am sure of Charlie ......YOU CAN DO THIS!!!
Find teh method you want and go from there. We all wondered in the beginning.
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PD two and a half years so far, all good,, and NO infection, yet.
As long as PD is working this well I am not about to change a thing.
Body position can be critical to fill and drain speed. Sitting I'm fine. Reading, using my laptop, but if I 'slump', lean forward too much, it is like the cath gets 'bent' internally and the alarm goes off. I simply have to sit up straighter and all flows well again. It's probably a good thing as straighter is better for the spine.
Take Care,
Charlie B
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This may be a silly question but have you tried different positions while laying down during the drains? For me the sweet spot is laying on my right side so I try my best to sleep that way. Also maybe check the total time/duration your cycler is scheduled for your treatment. If it is too long this might be the cause. Once after having a hernia they gave me a new program with half fills but kept the duration of the program too long and it was a nightmare with drain alarms and slow drains. When I eventually went back to my regular program the problem went away. I hope you get this sorted out soon.
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Regular BM's can help. Constipation must be avoided. The back-up/enlargement of the lower intestine/colon can put pressure on the cath, sort of 'choking' it down and restricting flow.
Talk to your team and Nutritionist about your diet. Make sure you are eating enough fiber as too much starches can act like concrete. Fruits and veggies that are allowed can be a great aid. You do not want to rely on supplements unless absolutely necessary, it can lead to a dependence.
All things in moderation.