I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: drgirlfriend on June 03, 2012, 05:19:39 PM
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Hey y'all! I need some input from the home pd cycler folk.
After being such a good transporter in the beginning, the bf is starting to get lower kt/v scores. This has started talk of more exchanges and the thought of being chained to the machine longer or having to take time to do a manual fill is terrible. He is still working and any more dialysis time would damn near make his life eat, sleep/dialysis, work, repeat. This doesn't sound like a high quality of life to either of us.
If he is going to have to be on the machine any longer, he needs to be able to work on his drawing while doing so. That's his love. I have read of folks on this board running extended lines so they can be more mobile while filling and draining. We are running a double drain line from the Liberty Cycler to the bathroom right now, but I'm wondering about an extension cord from the machine to the wall AND something to extend the line that connects him to the machine. Anyone rolling around the house with their machine? Is there an extension for the cassette?
Thanks for any ideas!
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DrG, Im not familiar with the Liberty Cycler, but can he not just wheel it into where he draws, plug it up, and just use more drain extensions? It has been a long time since J did PD, but I remember using alot of drain (Waste) line extenstions. This is where Manuals came in really handy cause you didnt have to bother with a machine. But the machine was great in that your day wasn't broken up!
It really is what you are most comfortable with, huh?
God bless,
lmunchkin :kickstart;
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lmunchkin, I think he would be more confortable if the machine stayed away from the drawing area - lots of eraser shavings and dustiness. Or maybe he could cover the machine, now that I think about it! To tell the truth I'm not sure if he'd want to do this at all. He is very persnickety about cleanliness - as he should be - and may not want to expose the machine to a less clean environment at all. I'm just trying to arm myself with ideas so I can be ready if this happens.
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Can he not do CAPD while doing his drawings? You know, like do his manuals, then go in the room and draw. That way, he won't have anything "Diallysis" around him. Then later, hook to his cycler when laying down. I don't know his situation, but would that not work? Just trying to figure out the best solution for you both.
lmunchkin
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You can use any three-prong extension cord for the Liberty Cycler. They also offer a 20 ft. type of cassette, and a 40-footer. Next time you order supples just ask for the extended type, and Frensenius (which is who I assume you are using?) should be able to send them out. I draw and paint as well, and I don't suggest doing it near your set-up, especially if he uses charcoal, or some other medium with messy clean-up.
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lmunchkin - that's a good idea! Breaking it up could work well.
Annig83 - As an artist you know what I'm talking about. He uses pencil then scans to the computer for coloring, so the mess isn't too bad. Thanks for the good info! I was hoping there were longer cassettes available.
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We have the 20 foot cassettes and then the drain lines. From what I understand, you can connect 2 drain lines together to make them even longer (we haven't tried it yet though, no need). The 20 foot lines work well, our PD nurse told my SO that the longer ones don't work as well - something about the machine not being able to register or pump that far. But we've had no problem with the 20 footers.
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What my wife did for me my be interesting for you. We used house a Liberty cycler. My wife went and looked and found a good sized sturdy table on wheels. We put the cycler on it and plugged it in via a heavy duty extension cord. This is not some cheap type of cord but one of those orange ones.
We were able to roll that thing around the living room and even into the bedroom. We were able to connect a drain line to the commode to let it drain all night. This arrangement work pretty well for us.
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When I got my Liberty, a cart with wheels that could be locked was provided with the cycler. Whenever I had to take my cycler to the clinic, I wheeled it boxed to the truck and it was an easy lift into the bed. I then put the cart in and reversed the process to take it into the clinic. I also used this method when I had to get out of the house for a few days because of a domestic problem.
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Great advice from everyone above; gosh, we've become quite the experts at handling our dialysis apparatus, eh? :grouphug;
We always keep my dad's Fresenius Liberty cycler mounted on the cart they provided; it's not the most sturdy cart but it's light and easy to move around. We situate it for every night session right in-between the bathroom and kitchen, and within 20 feet of the couch my dad sleeps on every night (hey, he loves the couch and hates beds now). We use a 20-foot patient blue line and the default 20-foot drain line (though we have the 20-ft drain extenders on-hand if necessary). That generally gives him enough range to do whatever he wants to do. Every morning after I disconnect him, I roll the cart into one of the bedrooms and we're free until the following evening's hookup. That cart is NEVER moved during a session, no matter how much I encourage my dad to move it if he needs greater access.
It used to worry me a lot when my dad would munch on all kinds of flaky and crumbly snacks while hooked up -- like cheetos or potato chips -- but I figured it wouldn't do much harm since this is all such a closed, secure system. I DO get nervous when he fidgets or scratches his belly or legs WHILE I"m hooking him up or disconnecting him. :)
BTW, my dad's a crazy transporter -- Kt/v of 3.75 -- and his best dwells are about 40-45 mins. Any dwells longer than that and he'll absorb the dialysate like a sponge, so over an 8-9 hr night session, he'll do 9-10 exchanges. So an increase in number of exchanges should be fine provided you clear it with your nurses first. Good luck!
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I, too, have Fresenius' cart and I find it very sturdy. There have been times I have forgotten to turn off a light in the den (or something else) and notice it after I hook up. By rolling the cart to the end of the power cord I can reach the switch to turn off the light. If I have to unplug it to get where I have to go, I just plug it back in and do a resume treatment like after a power failure. After I get the cart/machine back to where it should be, I check to make sure that no tubing is being pinched from my "little trip" to do a forgotten task. I usually do a walk-around before starting my treatment,but sometimes I fail to do it. Ahhh, I'm human...... When I got my machine I have the option of taking one that was assembled or one I had to put together, I took the assembled one. Check to see if everything is tight on your cart.
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You're right austinsoul2011! This is the best place for info!
We have the provided plastic cart and it rolls easily. It has nice big wheels so the carpet isn't a problem. I think that if the Kt/v problem persists, I will suggest to him that he go to the 20 foot cartridge and get a heavy duty extension cord for the machine. That way he can be mobile without taking the machine out of the bedroom or having to disconnect.
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I have the card that came with the cycler. It is in the bedroom next to the bed and I use one extension on the drain. When I travel (for work or play) I will put the cycler in the box it was shipped in as well as enough supplies for at least one session. I use to take the card apart and take it as well, but I have since rigged up a fold up table that I can put the cycler on and hang the DP bags off it as well.
I can't see any reasons why you couldn't roll your cycler to where you want to work (or draw) and use it there, just would need to have enough extensions on the drain to get some to drain.
Grumpy
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Hi,
I'm a tx patient, who did 7 months of in-center HD. Just a question here. I live in a townhouse style condo, with the bedrooms upstairs. Is one able to do PD with the machine, live in a home with the bedrooms upstairs, and not be confined to the upstairs the whole entire time? I never even gave PD a thought, because it sounded like such a depressing existence to me. Couple that with the fact that I work FT as well, and I wouldn't have had much of a life at all if I did PD. Am I right or wrong to think this way?
KarenInWA
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Hi,
I'm a tx patient, who did 7 months of in-center HD. Just a question here. I live in a townhouse style condo, with the bedrooms upstairs. Is one able to do PD with the machine, live in a home with the bedrooms upstairs, and not be confined to the upstairs the whole entire time? I never even gave PD a thought, because it sounded like such a depressing existence to me. Couple that with the fact that I work FT as well, and I wouldn't have had much of a life at all if I did PD. Am I right or wrong to think this way?
KarenInWA
There is a gal here who won't do anything but manual PD and I hate manuals. If you can work manual into you work schedule then you wouldn't have to worry about night time exchanges.
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Karen, I do CCPD and yes, when I'm connected to the cycler I'm pretty much relegated to a 20' radius of the system. But that's only for 9 hours at night. I consider that enforcing my getting a good night's sleep :rofl; tbarett does CAPD and is a big fan of the flexibility it gives her. I'm sure she will weigh in here shortly.
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KarenInWA I do my PD in my bedroom which is upstairs and has a master bath so I can run the drain line to the shower there. It isn't too bad doing it upstairs - I have a TV and can watch TV for the first couple exchanges, the (as Joe said) the rest is done while I'm asleep. Besides, for me retreating to the bedroom is sometimes a blessing as my wife babysits for at least one of our grandkids (and sometimes 5) during the day and evenings. Grumpy
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KareninWA - in-center dialysis was never a consideration for my boyfriend. He works full time and couldn't possible give that much time to being away from work. Besides, he is very private and didn't want people he worked with to know he was sick. So being able to do his treatment at home was very important. Tbarrett champions manual exchanges but, even though they take more time, the bf prefers nighttime PD.
Grumpy - after reading about the babysitting, I get your screen name!
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I was lucky. My job is flexible enough to offer early hours, and my clinic had late hours, so I was able to work FT and do in-center HD. It sounds to me like I would have been a prisoner to the PD machine, since I don't typically sleep for 9 hours at a time. Even on weekends! Granted, I was also lucky in that I did fine on in-center HD, and that my center worked with me when I needed to change times. Because of that, I was still able to go to concerts and short trips, in addition to working FT. I also did well on in-center. If I did PD, I would have had a harder time maintaining my lifestyle, as weird as that sounds!
KarenInWA
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If one must do Dialysis, then you have to find the right method that suits you and your lifestyle. "Nuff said! :clap; :clap; :clap; :clap; :clap; :clap;
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drgirlfriend - glad you figure it out.... Most friends don't think I'm grumpy - BUT see me at home after a weekend of sleepovers with the grandkids. I do love them all, but sure glad they can go home. Grumpy
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I've done both using the Baxter cycler 8 hours a night mounted on a cart with an 25 foot extension cord. The Japanese Baxter company doesn't allow us to use any extensions for the drain but they gave me a 6 big plastic containers to run the drain hose to. I put the plastic containers on the bottom shelf of the cart and was able to go all over the place. The problem with the cycler was the constant low drain alarms even with tidal set, I was never able to get a good nights sleep.
I asked my Dr. to switch me over to CAPD and started doing the manual exchanges. Agree with tbarett it is more flexable, takes 4 hours (4 exchanges at 1/2 hour) out of my day vice the 8 hours hooked to the cycler. And after my last exchange at night I'm free to walk around and jump in bed not hooked up to anything. I can sleep on my sides. So for right now CAPD is working great for me. And yes, I'm still working 40+hours a week. Hope all gets better for you, hang in there. :boxing;