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Author Topic: Questions,questions,questions !  (Read 6733 times)
KICKSTART
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« on: March 07, 2007, 02:29:59 AM »

I am interested to know more about using a machine overnight for PD and would rather ask you guys that do it ,than the renal unit, they make it seem like a walk in the park , but since coming here i have learnt not to take everything they say as gospel !!!!
Sorry guys but i have lots of questions to ask !!!

1) How long are you hooked up for at night ?
2) How many exchanges does the machine do per night?
3) How long between exchanges?
4) How long does it take to set it up at night?
5) How easy is it to disconnect (if you want to go to the loo?)
6) What are the advantages?
7) What are the disadvantages?
8) Do you feel better or worse than when you did CAPD?

Sorry there are so many questions, the renal unit are suggesting that i may want to do night-time exchanges, but i want to be sure that its the best option for me, as in general i dont mind they 4 daily ones i do at the moment, (i have got so used to fitting them in now !)
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Ginger
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« Reply #1 on: March 07, 2007, 08:31:32 AM »

Had a reply for you but just lost it. Will try again.
1. You will be hooked up for 8-10 Hrs.
2. You would probably do 4 exchanges if you are doing 4 exchanges on CAPD.
3. How long between exchanges would depend on amount of dialysate and amount of time ordered to be on the machine. I had about 2Hrs between exchanges.
4. It only takes about 10 minutes to set up at night.
5. It is fairly easy to disconnect but I never had to as the tubing was long enough to reach my loo.
6. Advantages: Done during sleep. No daytime interruptions. Less abdominal pressure during the day.
7. Disadvantages: Tied to the machine for 8-10Hrs.
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MyssAnne
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« Reply #2 on: March 07, 2007, 11:18:14 AM »


1) How long are you hooked up for at night ?

    As mentioned above, that's variable, from 8-10 hours

2) How many exchanges does the machine do per night?

   How ever many you are to have total, but if you are
  to have a fill during the day, that will count. For instance,
  I do a 'pause' exchange in the afternoon, then at night
  I hook up and do three in the evening, which take about 8.5 hours.

3) How long between exchanges?

     Each exchange dwell is approximately 3 hours. Some need a lot more.
     The longest is usually the one from the last one at night (morning)
     til the 'pause' exchange' in the afternoon.

4) How long does it take to set it up at night?

     If you're new at it, it seems forever! I have a system now.
     I throw the bags on in the morning, so they warm up.
     I connect the tubing when I come in for the exchange
     and start the flush then start washing up/getting lunch, whatever.
    Then you hook up, uhook when done, and done the next morning,
    I unhook everything, and throw another bag (or two!) on.


5) How easy is it to disconnect (if you want to go to the loo?

    Very easy. They really don't like it, but tough noogies. Sometims you just gotta go.
    I clean up first (always have a bottle of hand sanitizer handy!), grab a safety cap,
    disconnect, go pee, the reconnect (having washed up again of course!)


6) What are the advantages?

      Time, during the day, especially if you work or if you have other pressing issues in your schedule.
      For me, it's a lot easier to drain.  Reading numbers is so much easier too!



7) What are the disadvantages?

     If you don't drain or fill according to the preset numbers, the machine gets upset with you....
     If you kink your tube, the machine gets upset with you...
     Heck, if you look cross eyed at it, it gets upset with you!

      As for the drains/fills, if you are comfortable with what's been done, just press the start button
      twice for bypass.

 Do you feel better or worse than when you did CAPD?

      I do feel much better.  I get a lot more drained out of me now, not as much running back and forth, as I used to
      do when I did the cd 4 times a day. That got old REAL quick. I still do manuals, especially on weekends when I
      am away from the house.

    Hope this helps!  Oh, get a 5 gallon gas jug. it's great for draining. 
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KICKSTART
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« Reply #3 on: March 07, 2007, 01:05:51 PM »

Thanks for that info  :thumbup; not convinced me to use that system though at the moment
A) because there is no way i stay in bed for 8-10 hours or any possible way i could do!!!
B) i tend to go to the loo 3-4 times a night , note; this only started when i started doing PD , so not sure if there is a link there, my doctor suggested it may be my tablets that i take for restless legs that is having this side effect???. Nothing worse than spending hours trying to get off to sleep then as soon as i do , waking to go to the loo!!! :banghead;
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MyssAnne
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« Reply #4 on: March 07, 2007, 01:19:54 PM »


  For what it's worth, you don't have to be in bed for this. I am, only because of the way the house is set up,
  there's no where else to go once I'm hooked up!  You can unplug the machine and move it to another location.
  For instance, you could set up in front of the tv, stay there for 4 hours, then while in the dwell mode, unplug
  it and move yourself to bed.  Of course, if you couldn't reach the bathroom, you'd have to be sure you'd done
  all you needed to do otherwise!  As for going to the bathroom, well, ahem. I use a 5 cup measuring pitcher.
  Just the right size to pee in, for a lady, if you get the drift. I have it right in the entrance to the bathrom, so
  I can just reach the paper towels for after. Or, you could always have a roll of tp there as well.  It's just that
  sometimes you just HAVE to use the toilet. Nothing else will do.
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Ken Shelmerdine
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« Reply #5 on: March 07, 2007, 02:16:48 PM »

Had a reply for you but just lost it. Will try again.
1. You will be hooked up for 8-10 Hrs.
2. You would probably do 4 exchanges if you are doing 4 exchanges on CAPD.
3. How long between exchanges would depend on amount of dialysate and amount of time ordered to be on the machine. I had about 2Hrs between exchanges.
4. It only takes about 10 minutes to set up at night.
5. It is fairly easy to disconnect but I never had to as the tubing was long enough to reach my loo.
6. Advantages: Done during sleep. No daytime interruptions. Less abdominal pressure during the day.
7. Disadvantages: Tied to the machine for 8-10Hrs.

I agree with everything above with the addition of 1 more disadvantage
If you're using a Baxter Cycler it does make a noise. You hear sort of swishing and gurgling noises when it is filling and draining and also an intermittent humming and clicking noise when it's on dwell time.Although it's not that loud  it can be very distracting when you're trying to get off to sleep. Fortunataly there is a way to make it silent during dwell time which I learnt from someone on this site. So now when I get in bed I start the machine and sit up read during the first fill which usually takes about 10 minutes, then there's another 10 minutes while the machine sucks fluid from the second bag to the bag on the heater, then you're in dwell time. Then, you STOP THE CYCLER USING THE RED BUTTON, wait a few seconds then SWITCH BACK ON USING THE GREEN BUTTON. After a few seconds of swishing and gurgling the noise stops the cycler then dwells in complete silence. I then settle down to go to sleep. If you're not too much of a light sleeper the other drains fills and dwells shouldn't wake you up. I usally sleep through them unless I am awake doing the Duvet River Dance (RLS) In which case I just repeat the switch off switch on routine.

Generally speaking the advantages far outweigh the disadvantages. Why not at least give it a try for a few weeks?
If it doesn't suit you, you could always go back to CAPD
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Ken
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« Reply #6 on: March 07, 2007, 03:31:26 PM »


5. It is fairly easy to disconnect but I never had to as the tubing was long enough to reach my loo.


How long is the tubing?  I hope mine reaches.  I get my cycler on the 20th and can't wait.   :2thumbsup;
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Ginger
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« Reply #7 on: March 07, 2007, 09:01:52 PM »

I get patient extendor tubing which adds an additional 12Ft to the tube on the cassette. This gives me 22Ft that I can move away from the machine before I reach the 'end of my rope'.
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Chicken Little
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« Reply #8 on: March 08, 2007, 09:58:23 AM »

I get patient extendor tubing which adds an additional 12Ft to the tube on the cassette. This gives me 22Ft that I can move away from the machine before I reach the 'end of my rope'.

That's great.  Did you just ask for one to be delivered with your supplies?
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MyssAnne
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« Reply #9 on: March 08, 2007, 10:32:58 AM »

I'm gonna try to remember to ask my nurse Monday. You're on Baxter, do you suppose
Fresenius machines have those connecting tubes also???? That would be wonderful,
if so!!!
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Ginger
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« Reply #10 on: March 08, 2007, 11:33:41 AM »

I just get a box of patient extender tubing sent with my regular supplies.  These are for the Baxter machines. I do not know about the Fressenius ones. Check with your supplier on the Fressenius tubings.
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billoggblog
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« Reply #11 on: March 09, 2007, 05:48:00 PM »

Everything above is spot-on, the only part I want to comment on is question No.5.
I have the Baxter's machine, because I'm a light sleeper, I'm off and on like a light bulb (half the night talking to you lot in the chat room).
I know for sure that the Fresenius machines only allow you to come off once during the night (UK machines may be different from Us, so check with unit).  My unit changed over to Fresenius last year, but. three of us have opted to stay with Baxter's.
Finally, I was on Pd 2 years, APD 5 years, and I much prefer Night time APD.
Let us know what  you decide.

Bill.
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« Reply #12 on: March 09, 2007, 08:00:25 PM »

My tubing is at least 20ft long.  I can pretty much get to all the "important" places at night.

I do 4 exchanges at night with 1:30 dwell times.  I normally hook up around 10:00pm and off when I get up around 7:00am.  It takes about 20 minutes to get everything setup, but most of the time is waiting for the machine to prime the lines, you don't have to stand around for that.

Advantages is you don't have to do exchanges during the day, just not having the full filling during the day is great.  Disadvantage for me, is every drain when I get to around 200ml left to drain, the stupid machine deeps at me saying I'm not draining fast enough.  I have to stand to drain the rest, I'm getting my catheter check on the 19th.

It is well worth it to do the cycler at night, even if it does wake you up every couple of hours.
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« Reply #13 on: March 09, 2007, 09:25:46 PM »

KICKSTART, I have been on both Baxter and Fresenius~ I opted for the Baxter, even though I am the only one in our dialysis unit on it!  To me it seems easier to set up, tear down, and manage.  I don't have alarms unless I kink the line, which is rare.  I solved the noise problem by setting the machine out in the hall from my bedroom, though the noise is not that bad at all.  I have the HomeChoice Integrated PD 3-prong set which has the 20 foot tubing, so I can reach my computer room, bathroom, kitchen and bedroom~  If I roll the cycler stand a few feet across my kitchen, I can even watch television.  Oh,  and if the bathroom isn't nearby for draining, a 5-gallon bucket with the tubing clipped on is easy to handle.   I really love my Baxter cycler, and it is not difficult to travel with either.  Best of luck on the 20th!
« Last Edit: March 09, 2007, 09:31:06 PM by anja » Logged
Ken Shelmerdine
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« Reply #14 on: March 11, 2007, 01:19:57 PM »

Disadvantage for me, is every drain when I get to around 200ml left to drain, the stupid machine deeps at me saying I'm not draining fast enough.  I have to stand to drain the rest, I'm getting my catheter check on the 19th.

It is well worth it to do the cycler at night, even if it does wake you up every couple of hours.

Have you tried a tidal setting. I too cannot drain the last 200 ml lying down. I have my machine on 80% tidal. this means that the first fill is the normal 2ltr but the machine is only looking to drain 80% (1.6ltrs). Each subsequent fill and drain stays at 1.6litres. Then when I get up in the morning I do a manual drain standing up to get the rest of the fluid out. Hell you can't keep getting out bed every one and a half hours you'll be shattered.
« Last Edit: March 11, 2007, 01:22:31 PM by Ken Shelmerdine » Logged

Ken
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« Reply #15 on: March 12, 2007, 07:51:39 AM »

I have the machine on tidal.  My nurse increase the fill volume from 2000ml to 2600ml to see if we can "float" my catheter out.  I think this has helped a little bit.  I think I found my solution to my problem.  I carry 500ml during the day which on the initial drain, I drain off about 350ml.  I'm just draining 50ml then bypassing the rest.  I think this is giving me the extra additional amount I need to keep me from reaching my "slow" drain times.

 :clap;
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1986 - Diagnosed with Alport's Syndrome
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carolyn77531
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« Reply #16 on: March 13, 2007, 07:08:29 PM »

jessica is on tidal...the dialysis unit put her on tidal..she had alote of booty pain....
she likes tidal....
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Ken Shelmerdine
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« Reply #17 on: March 19, 2007, 06:12:25 AM »

jessica is on tidal...the dialysis unit put her on tidal..she had alote of booty pain....
she likes tidal....

What's booty pain?
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Ken
carolyn77531
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« Reply #18 on: March 19, 2007, 06:18:09 AM »

sometimes the catheter gets low.....it causes alote of pain on the booty,,,i ask her one time what it feel likes..she said its like her being on her monthly and having to take a BM......the nurses called it booty pain.. she has been calling that since she was put back on dialysis
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« Reply #19 on: March 20, 2007, 05:43:11 PM »

Sounds like Booty Pain is another way of saying it's a Pain in the Ass   ::) 
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carolyn77531
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« Reply #20 on: March 21, 2007, 05:26:58 AM »

yea, you are right
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