I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: murf on April 16, 2010, 01:08:34 PM
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Just got back from my neph and he suggested that I go onto APD or night cycler. Quite pleased with that as will free up my days to spend with friends and alike. Means I can go fishing for a day in the country or spend a few hours at the cricket. I am looking for advise about how the cycler actually works. Specifics like where to set it up, how long does it take, any pitfalls and is it hard to learn how to do? TIA
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You need to have it by the side of the bed. Its not so bad to learn it ..about 5 day course but depends how fast you pick things up! Great if it works for you .. i didnt like it! I did 5 yrs plus manuals , went on to APD and felt like crap , now on hemo cause PD came to an end. It can disturb your sleep some people cant get used to the sound of it. Set up , well its like anything you get faster the more you do it ! It used to take me about half an hour. If it works for you then great , like you say it free's up your day !
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I love the cycler. I did manuals for on day on Christmas Eve, and I felt like it took up my whole day. I am on for 8 hours and 20 minutes, but my days are free. I had to add a manual during the day, because I didn't want to be on the cycler for a 5th exchange, but I will be switching to extraneal this week, so I won't have that anymore. I have two kids in elementary school, so manuals are tough for me. Someone always needs something! LOL Good luck with the cycler. I think it gives you a lot more freedom!
ETA: I have been doing it for less than a year, and set-up takes me about 15 minutes.
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i was on apd for about 4 years and i also did manuals. loved apd. we used to pack up our boxes and the machine and take off, so long as you have electricity you can go on holidays and feel normal. I used icodextrin during the day, i worked (for half the time till hubs started his own company and then i started working from home). i live in sydney and we used to go to queensland, melbourne, dubbo (inner nsw few hours away). we went away for over a week, no need to book into hd centre and baxter can deliver your supplies to your hotel or caravan park etc.
As for being free during the days, i was never symptomatic till PD started failing (after almost 7 years) and my residual function faded so for me i was actually able to almost forget about being chronically ill, bad thing was so did everyone else so when it caught up with me they thought i was lazy or a sook.
I had my machine set up so that it was close enough to the ensuite that i could go without disconnecting. also APD reduces the risk of peritonitis as you hook up and stay hooked up you don't run as great a risk of contamination.
also if you are on high dextrose bags it can help you to save your peritoneal lining as you aren't doing such high glucose exchanges (if you mix 1.5% and 2% etc then you actually get a lower sugar % in your dwell but it does average out over the night so you are removing the fluid efficiently i could pull off over 1.8lt each day with icodextin 1.2lt and then 2 lt of 1.5 and 2%)
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My cycler is out in my hallway (very large, almost a room in itself at 11 feet wide). I use one patient extension and two drain extensions so the drain line will reach the toilet. Works fine for me, never wakes me up. It takes me about 20 minutes to completely set up, and my total dwell time is 10 hours. In order to be completely free all day, you will need to be on Extraneal; otherwise, you will need to do a midday exchange on Dianeal.
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If you have done manual, APD is a piece of cake. A half day to one day of training is enough. A week of training is mostly used for manual PD. The machine can be anywhere in the bedroom. A 22 feet line can reach most place in a bedroom. It takes about 30 minutes from the time to start setting up to start to do dialysis each day. We don't need that much time to set up. It is the machine to need this time to warm up solution and get ready.
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Thanks for the great information. One question: if it takes about 9 hours to complete the cycle what do you do to pass the time. I would sleep about 6 hours (or less) so, do you move around, stay in bed. I think I would get restless remaining in bed for so long. Do you get bored waiting for the end? Probably a silly question but am a novice.
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I wish that 6 hours of sleep is good enough for me. Normally I need 10 hours of sleep, so it is not a problem for me. There are two ways to spend another 3 out of 9 hours: (1) doing things within 22 feet of distance (if you use an extension line, it will be 34 feet). That means you can do anything as long as your patient line can reach. For example, watching TV or playing around the websites. And (2) you can disconnect with the cycler and reconnect it later. The second option gives you all freedom, but it increases chances of infection.
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My partner doesn't sleep much either murf. 4-5 hours at the best of times. He has been on the machine since September. Although, at the beginning, it took alot of getting used to, with the noise & all. Now, the noise doesn't bother us at all, and the freedom it gives him, comparing to what we thought dialysis would be like.
The rest of the time, he just watches t.v, and thankfully we have a laptop he can use too.
Hope it all works out for you murf :2thumbsup;
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Thanks for the great information. One question: if it takes about 9 hours to complete the cycle what do you do to pass the time. I would sleep about 6 hours (or less) so, do you move around, stay in bed. I think I would get restless remaining in bed for so long. Do you get bored waiting for the end? Probably a silly question but am a novice.
I have my machine on a wheeled cart and have it wired with 100 feet of extension cord so I can roll all over the house if I want to. With one patient line extension, I can get across the hall into my office, so that works really well too.
I have the cord on a little reel setup that keeps it out of the way - it's really convenient.
My therapy is only 7.5 hours total right now, but I anticipate increasing my dwell time n the next few days to bring it up to 8+ hours. I'm like you - after six hours in the rack I'm ready to do something else..
Some days I get bored on PD, but I usually find a way to pass the time that quashes that quickly.
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Thanks for the great information. One question: if it takes about 9 hours to complete the cycle what do you do to pass the time. I would sleep about 6 hours (or less) so, do you move around, stay in bed. I think I would get restless remaining in bed for so long. Do you get bored waiting for the end? Probably a silly question but am a novice.
Like you, I sleep for only 6 hours or less and found being tied to the machine for 9 hours, plus the setup prior and cleanup after meant that I was occupied with the machine for ten hours each day with little flexibility. When I can't sleep. I like to get up and do things, (like going out to my workshop and doing some woodwork.) I found the cycler to be very restricting, whereas CAPD gives me greater mobility options.
(I also had problems with machine alarms, but that, I imagine, would have been overcome in time.)
I guess it depends very much on the individual.