What do you do on CCPD when you're not sleeping

[Goofy]

I was just starting to think that what if I can't sleep when I'm on the machine. 

How long is the average length of time you need to be hooked up? 

If its 10 hours, you can't possibly sleep that long so what do you do when you're awake?

Is the tubing long enough so you can move around your house?  I don't want to be held prisioner in my bed! 

Does anyone ever cut their time because they got on later and couldn't do the whole time recommended?

If you do, do you make up for it with manual exchanges?

Is there anyone who never does the recommended time? If so, how do you feel?

Anyone ever skip a day here or there?

My bedrooms are upstairs.  Is it possible to start PD when you are downstairs and then carry the equipment to the bedroom to finish your time?







EDITED: Moved to PD home dialysis topics-kitkatz,Moderator

[peleroja]

I couldn't sleep either when the cycler was right next to my bed.  Luckily I have a very large hallway (11 feet wide), so I moved the machine into the hallway, and use one patient extension and two drain extensions so I can drain into the toilet.

I have heard of people being hooked up between 8 and 10 hours.

I frequently wake in the middle of the night, and with my patient extension I have enough tether to get into the kitchen and wash dishes or tidy up.  It's also long enough to get into my den and watch tv or read.

The initial patient tubing directly from the cycler is about 6 feet.  I use an extension which is 12 feet, so I have a tether of 18 feet.  Extensions have to be approved by your clinic.

I don't know about anyone else, but I get on at 8 pm so I can be off by 6 am, as I am traditionally an early riser.

I don't usually shorten my time, but if I were to do so I would definitely do at least one midday exchange.

I have never not done the recommended time for me (10 hours).

Last month I was very sick and I skipped my midday exchange, the overnight and the following midday exchange.  I'm still alive!

If your bedroom is upstairs, you would need multiple extensions to start downstairs and then move the cycler upstairs.  The cycler weighs about 25 pounds, plus the bag on the cycler (anywhere from 6.6 to 13 pounds), plus you would have to move all the other bags at the same time, as they are all connected to the cycler.  You may also need an extension cord so the machine stays plugged in.  Personally, I don't think it can be done.

Hope that helps!

[dh514]

I am on for eight hours. I hook up by 9:45 becuase I have to get up at 6:00. I will usually hook up and read or watch tv a little and then go to sleep.

I do not cut my time short and have never missed a treatment.

I do not and would not do this but, you would actually on need to be hooked up during the drain and fill period. I have a disconnect end in case I need to disconnect so after you fill, you could disconnect and hook up again when your dwell time is about to end. 

[billybags]

 dh514, My husband was hooked up for 8 hours. So I would set the machine up early evening and he would hook up about 10 finish at 6. he would disconnect then and have 3 wonderful hours of sleep where he could toss and turn about. I think I was the one who could not sleep because of the noise. He would never miss a treatment and he also had to do 1 manual at tea-time. It takes a while to get use to the set up, I put tape over the blinking light and a thick blanket thing under the machine to try to deaden the noise. I even tried ear plugs to no avail. You will get use to it.

[st789]

Read.

[Lillupie]

hello,
 I am on for about 8 hours.
 THe length of the tubing and being held prisioner is kind of a problem for me. THere are some nights that I actually do not get on the machine until 2am! I also have my bedrooms upstairs. I guess I delay getting on the cycler because I dont want to get hungry and I dont always get the internet in my room (I use wireless). I usually go  on when I make totally sure that I am not going to need to go online for anything, eat or drink anything, basically when I am not going to get up anymore except for the bathroom.

 Yes I have cut my time short, but this is rare, and I dont recommend it! My monthly clinics and Baxter delivery are usually too early for me, and I have to get off. I use the flexicap to put on the machine end, and a mini cap at the end of my tube. (This method ONLY works if noone is at home, because after awhile the machine starts beeping). I usually have to do it because I was just too lazy to get on earlier then I did. lol

Yes when I have missed at night, I have made up for it the next day with atleast 2 or 3 daily exchanges. Once I locked myself out of the house (not on purpose), so i slept in my car. lol THe next day I did manuals. If you do miss a night, do an exchange asap or you will observe the dialysis.

 I always do the recomended time. Or do manuals to make it up. (Best way not to gain extra weight, the dialysis solution has calories, that will make you gain weight)

Lisa

[Hanify]

I do a 9 hour cycle on the machine and yes, sometimes it's a pain.  But I go to bed and read for a while.  I don't have the extensions, so can only walk around my room a little bit.  My husband made a soundproof box for the machine to sit in which cuts most of the noise out - but I can still hear an alarm.  Our renal clinics over hear encourage PD patients to have a day off dialysis once a month.  This is assuming your fluid levels are OK.  I find now I am so used to the machine that I find it difficult to sleep without it!  How sad is that!
I often change to manuals if I need to.  Rather than lugging the machine around, or for example, when I went to Samoa in August.  One of the really goof things about PD is it's very forgiving.  So if you can't do something, or you make a mistake with the % bags or anything, you can easily make up for it later by doing a manual bag.  Because it's 24/7 you can be quite flexible really.

[Hanify]

And I forgot to say, I often hook up early, then come off for the dwell and do other things.  This is apparently not that good cos you are more likely to get an infection, but I haven't had any problems. So, when we were traveling and had to be at the airport early, I hooked up at about 8pm, came off for the dwell, hooked up again and stayed in bed.  The extensions sound really good, but like you, my lounge is too far from my bedroom even with them.  You might find you prefer doing manual bags - lots of people do.  Always remember you have options.

[jennyc]

When Pd was going great i only did 7.5 hours per night. i did no afternoon bags. I was having huge issues sleeping until recently. i was blaming it on the machine but it was my son coming into my bed and disturbing my sleep patterns. now that he's in his bed all night i sleep from about 12.30 to 7.30/8am

I usually throw a t-shirt or towel over the display (i'm a pitch black sleeper).

I'm also on a tablet called clonazepam for restless legs (it knocks you out). I don't advise taking them every night as they are VERY addictive. I usually take them for the week surrounding my period becuase that is when i get resltess the worst. aside from that i take 1/2 a tablet onlly when needed (once pth and vitamin d are correct restless legs tends to slow down).

I wait until the first drain is finished before going to sleep, i usually get drain pain on the first one.

Cycler, for me was a lot better. because i'm a fast transporter (you'll find out if you fast or slow once they test you) the cycler was fantastic for me, having the fluid in for 2 hours stopped me gaining any weight.

If i want to do less time on the machine i just reduce the limits in the programme and do the requried amount of afternoon bags (so long as i do 10lts it doens't matter). I'm also finding that now that i have the 6lt, 3lt and the 2.5 (icodextrin) i'm not using my 2lts anymore on the machine becuase the other three are sufficient so i save them for when i need them.

If we are having a big weekend/night i will do 2 extra bags before i go out and then if i'm worried about my wieght i'll drian out the last one and put in 1lt of icodextrin (or what ever fluid your using). I'd head out, come home or stay in the hotel. do the other bags either in the hotel as manuals, wait till i got home or we'd take the machine and all equipment to the hotel with us (if we stay for more than one night). Usually i just take the manuals though becuase i don't liike to get that icky feeling you get when you miss doing all your dialysis. I did sometimes miss bags (when all was great and my numbers fine) but not that often and never now.

With my machine i swapped sides with hubby so that now i can acess all areas of my bedroom without disconnecting, i can even reach the whole way into the ensuite (so i don't disconnect to use bathroom). We have a tv in the room and a laptop so if i can't sleep i'm occupied till i do.

Hanify, i do the same as you, i don't usually finish now (doing 10 hours) until after i've done the school run. so i come off for the morning. Sometimes i even leave it in alarm for 3-4 hours and just keep pressing stop to get the extra 2 hours dwell in.

it is great becuase it frees up your day for what you do best, living. Although if you can't use the machine for what ever reason  try maybe 2/3 bags on it and rest manuals, but even with manuals during the day it dones't take that much time. When i was on manuals i did everything while i was exchanging. Dad rigged an IV pole for me (base off an office chair with a length of pipe shoved in it with some spring hook at the top) to i walked around, cooked dinner, did the ironing (be careful of the tubing though) did washing up, bathed my son. Had showers while hooked up (use a coat hanger on hook it over the side of the shower). It's safe, i know of heaps of people at the clinic who have done it and not gotten infect becuase the tip isn't exposed, your all hooked up and covered. You'll be suprised at the things you can do on Pd.

[Jie]

I am doing 8 hours a night and cut the time short if needed, but not very often. No any makeup is added. It is easy to cut the time short, just bypass it. My normal line is 22 feet, long enough to walk around the room, but not long enough to walk around the house. I set the cycler noise very low and light very dim, so that it does not affect my sleep that much.

[sico]

I do 9 hours a night after the initial drain. Sometimes use on opticap to disconnect during a dwell if i have to leave my room for an unforseen reason. Usually watch tv, surf the net or play PS3 after i hook up.
I skip a night occasionally, sometimes make up for it with manual exchanges.
Obviously the more dialysis you miss you won't be the best you can be.

[girliekick]

golly i am contemplating skiping tonight, which i do some times, once maybe twice amonth, i used to make up for it w manuals but i rarely do that anymore  more. As long as my cabs are normal or close to normal then i dont worry too much about a skip here and there. I think my prescribed time is about an hour and a half more than what i actually do. I also do a midday i dont do it as recommended sometimes i bypass its or only do it for 45 min.

There way one time i kept forgetting  supplydes and ended up missing two days in a row. I felt awful. As i was only able to do one manual exchange during that time.  my nurse told me some pt can miss a day and be sick and some can go a week.
Each one is differ 
'll figure out what works for u. My doc would have prescribed more time and
more fluid had i not begged her to wait until my Kt/v  CAME back mine WAS ALMOST 3  So she let me keep it as it  was and thats been about 8 mo.

Goofy, i just adore ur forsite, i would so like to here ur transplant questions. Esp post TP. I have many but i feel as if they
 Just get jumbled when i try to explore then esp in the fourm setting.

Girl

ps I still pee

[calypso]

I usually slept well on PD on the cycler at night. When I couldn't sleep I played video games or watched tv cause my computer is on a desk near my bed. So I'd just get out of bed sit at the desk and play Battlefield 2, GRID, or Left 4 Dead. The regular line was long enough for that. I couldnt leave the room without disconnecting though.

I skipped daytime exchanges and once or twice even the cycler when I was still urinating and felt fine but the last few years after I stopped urinating I would never skip because I wouldn't feel as well if I did.

I was on 10 hours a night plus 1 daytime exchange. Sometimes I would cut treatments short if I had to but I never felt any different when i did and I didnt cut them short my that much maybe 1 hour or 2.

[looneytunes]

Hubby is on for a total of 12 hours per night right now.  He hooks up for the first fill around 6pm, then uses a flexicap and unhooks for the dwell period.  Then back on in time for the drain and normally stays on for the rest of the tiime.  There have been times though that he allows the 2nd fill and unhooks again if we have company and he want to come out into the living room and visit.  He is off by 7 to 7:30 a.m. 

We use 2 patient extension lines to allow him access to the bathroom while he is hooked up.  He has a laptop and we have wireless in our home as well as a TV or magazines if he is not ready to sleep.

He has shortened his recommended time in the past but won't again as his clearances fell below the adequate range and he felt really bad.

[Savemeimdtba]

I'm gonna be the odd man out, I just sleep I read a little during the first fill (cause it hard to GO to sleep when that's going on), then go to sleep during the dwell and wake up in the morning and it's done.  I do about 9 hours.  I had a lot of trouble in the beginning with the sleeping and the drain pain.. but it all went away eventually.

[Hanify]

Hey Goofy - how'd it go.  Come on and tell us!