I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Savemeimdtba on April 23, 2009, 08:39:26 AM
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Last night was my first night with the Liberty cycler.. and it wen't okay. I had about 5 alarms through out the night - I'm assuming I'll adjust and learn what not to do (one time, it was just my fiance stepping on the line :P That is not my fault). Our fans block out most of the noise it makes - that was my biggest concern going into this since I am such a light sleeper. Since it was my first night I didn't get much sleep anyways... with the alarms and me worrying the machine was going to go crazy and put 15,000 ml's of fluid in my stomach.. that would not be pleasant.
The patient line did not reach the bathroom.. so I had to wait until it finished this morning, unhook and then go. I apparently got up too fast and ended up throwing up :( I know better than getting up fast but I really had to go! Stupid machine. Anyways... I deem the night a success even though we had problems - dialysis was complete and I now have my whole day free!
I decided I needed a cart for the cycler because if it was too noisy I was going to push it out in the hallway (and I still might). So we found this cart at Lowes that had 4 baskets that pull out and it seemed perfect for my supplies to fit in (I think someone else here had something similar). It is working out quite nicely and it's cute too (in a hospital supplies type way?).
Here are the pictures for your viewing pleasure. My fiance found it weird that I was taking pictures of it :P I told him my non-kidney friends wanted to see it, it's how we get our kicks.
picture 1: The cycler in the bedroom
picture 2: The drawers/supplies (the other two fluid bags are in the top pull out drawer and I just hook them up to the machine through the basket)
picture 3: boxes in my spare room
picture 4: boxes on the other wall in my spare room
picture 5: Where I do my manual exchanges
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I'm so glad your first night went ok. Thanks for the pictures. It gives people and idea of the space that will be needed if they decide to do PD.
:thumbup;
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Yea, It takes ALOT of space.. I didn't think it was all going to fit yesterday but the Fresenius driver was very nice and rearranged the room to make it work. There's got to be at least 100+ boxes. 25 manuauls and 90+ cycler boxes.
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oops... I accidentally hit quote instead of modify and can't figure out how to delete this one away.
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If you are a light sleeper, does the cycler have to be so close? I'm on the Baxter Home Choice Pro, but
I have enough patient line to place the table some feet away.
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were gonna try moving it tonight, last night I just wanted it near incase something went wrong. We got a cart with wheels so I could push it out in the hallway if need be, we'll see how it goes!
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:clap; :clap; Thanks for the pics Savemeimdtba.
I have been using a similar Fresenius cycler. You will soon have the routine worked out.
Do you do a manual exchange during the day as well?
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Thanks for the pix,Save. Going to Loews to get that cart seems perfect. Thanks again. Hubby on Baxter Pro Choice and we are able to have on table approx. 8 ft away from bed. But first few nights, like a new born baby we kept it close :cuddle;. But so far have not had any alarms so baby can now sleep away from daddy :2thumbsup;.
Also call your PD nurse and ask for patient extension and instructions to use it. When nature calls you need to answer, not nice to make mother nature wait, she can get nasty and punish you, as you have already found out.
Wishing you luck with your "baby" and Good health !
ccstan
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Thanks for the reply guys :) I currently do not have to do an exchange in the day time (lucky me, I know!). It's very weird to not have fluid in my stomach but I'm getting used to it. I'm still having a few alarms every night (my screw ups that I am slowly learning and fixing) so I think I need to keep the baby close for a few more nights ;) I'm waking up at every exchange so I'm really lacking in sleep (and snapping and fiance :P).
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Thanks for posting the pics and sharing your experience. I just had my PD catheter placed last week and start training in a couple of weeks. Won't be until the end of May that I will be up and running at home. I think I am getting the Fresenius Newton Cycler to start with. We have a similar 4 drawer cart from IKEA that I am looking to use as well. Wish you the best as you continue to work out the kinks.
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WHo determines how long you do manuals before starting to use the cycler?
Can people be trained right away on the cycler. I also dont understand how some people do two manuals while others have to do four or more? Or some people use the cycler but also have to do a manual or keep fluid in during the day.
I have to keep working and i cant do exchanges at work.
Great setup :thumbup;
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From what I understand it just depends on the person... we're all different and need different amounts of dialysis due to several factors (remainingl kidney function being one). I still have some kidney function left so I don't have to do an exchange in the day time. I think doing manual for the first month is a standard rule in the US so you are prepared incase there is a power outage and can't use your cycler.
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WHo determines how long you do manuals before starting to use the cycler?
Can people be trained right away on the cycler. I also dont understand how some people do two manuals while others have to do four or more? Or some people use the cycler but also have to do a manual or keep fluid in during the day.
I have to keep working and i cant do exchanges at work.
Great setup :thumbup;
Pk It all depends on your clinic and your clearance. Everyone on PD is different.
I had to do six months of manuals before I was able to swap to the cycler. I now do a manual exchange in the afternoon and the cycler for eight hours a night. I carry fluid 24/7. I also still have some residual function left. But due to the size of my lovely PKD kidneys, I can only tolerate 1600mls. Anything more and.... :puke;
You will be able to work around your dialysis. Just remember the program they set you is what YOU need and to feel healthy you need as much dialysis as you can get. Healthy kidneys work 24/7.
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I started on the cycler and do not do manuals. What they have told me is that if the kinetics remain good I will not have to do manuals. If they worsen then I will either have to add a cycle or add daytime manuals.
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We just got a liberty cycler machine last week--my husband is on home dialysis, he is doing the manuals right now of course, and now we have the cycler, and we were unpacking supplies and come to find out the blue clamp-patient line, the one to which he will be tethered, is pretty short----like maybe 5 ft I am not sure, he called to ask then for a longer line, they didn't seem to know what he was talking about, but his nurses are looking into it-------
My ? is, DO THEY make a longer patient line for this machine??
Cindy
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Not sure about that machine but Baxter has what is called a (patient extension line). So maybe ask your clinic for that or something similar.
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Thank you for your help---he called em, and we have been waiting for a reply, perhaps he should call em back again, and be the squeaky wheel:)
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WHo determines how long you do manuals before starting to use the cycler?
Can people be trained right away on the cycler. I also dont understand how some people do two manuals while others have to do four or more? Or some people use the cycler but also have to do a manual or keep fluid in during the day.
I have to keep working and i cant do exchanges at work.
Great setup :thumbup;
I started on the cycler. Had my catheter placed on a Tuesday and had my first cycler training on Wednesday, did my first therapy (three cycles of 500ml) on the Friday immediately after.
Never done manual bags except for training.
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We just got a liberty cycler machine last week--my husband is on home dialysis, he is doing the manuals right now of course, and now we have the cycler, and we were unpacking supplies and come to find out the blue clamp-patient line, the one to which he will be tethered, is pretty short----like maybe 5 ft I am not sure, he called to ask then for a longer line, they didn't seem to know what he was talking about, but his nurses are looking into it-------
My ? is, DO THEY make a longer patient line for this machine??
Cindy
My Baxter cassettes have a 22 foot patient line, and I also have 12 foot extension lines.
Takes a few extra seconds to prime, but after that it's no different. Gives you a little extra room.
Don't know if Baxter makes anything different in terms of a standard patient line, this is all I've ever received and I don't see any other options on the ordering list.
22 feet isn't too bad out of the box. That and the extender gets me all around the bedroom, into the bathroom, and across the hall into my office and to my home compueter. Works great for the days I cycle while awake, and I have the whole setup on a cart similar to yours with a 100 foot extension cord on a hose reel type system that will let me go all over house if I want to - even out back on the porch. LOL
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Glad to read you're transitioning over to the cycler. I think once you get used to the quirks, you'll like it better than doing manual bags.
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Sounds like the cycler is going to go well for you. Glad to hear. I bought a cart at the Container store. The top is big enough for the cycler and one bag. The lower shelf holds supplies.
I started on the cycler (just a little training on manual just in case) My PD nurse felt I needed a daytime exchange after kt/v readings were done. No big deal (I'm filling as I type this). I used all manual when I was away in Mexico over Xmas. The manual is good, but I didn't like having to plan my day around exchanges.
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We just got a liberty cycler machine last week--my husband is on home dialysis, he is doing the manuals right now of course, and now we have the cycler, and we were unpacking supplies and come to find out the blue clamp-patient line, the one to which he will be tethered, is pretty short----like maybe 5 ft I am not sure, he called to ask then for a longer line, they didn't seem to know what he was talking about, but his nurses are looking into it-------
My ? is, DO THEY make a longer patient line for this machine??
Cindy
Yes, they make a 25 feet patient tube. I was told at first that because it is a one piece unit it was more expensive and I couldnt have it. Well, do you think I cared about the cost when it gave me more freedom! lol
I was the first in my clinic to get(demand) the long tubing. The only draw back is it doesnt have a second connector.
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I've used both the Fresenius and the Baxter machine. Both allow you to unplug during the overnight cycle if you need to get up for some reason. When you go back to bed, you simply hook back up.
Great idea to share the photos. That would have helped me so much pre-dialysis when it was all so fearful.