I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Deanne on September 05, 2013, 03:36:45 PM
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I started PD training on Monday. Monday/Tuesday on manual PD, with me doing PD at home by myself starting Tuesday evening. Wednesday/today was training on the cycler. My home visit was today and they set up the machine and did a test exchange to make sure everything was working correctly. Tonight I'm on my own to make sure it's all ok, then tomorrow morning I wrap up training at the dialysis center. My nurse said it was a record training time, but I'm mostly feeling ok about it as long as nothing goes wrong. I need to stop and think through at each step. It doesn't come to me automatically yet.
What things am I most likely to mess up? It's a Liberty cycler using drain bags.
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:cuddle; :cuddle; :cuddle;
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Good luck with it Deanne. I have a training nurse coming to my home next Thursday. Its the day after catheter and fistula surgery. Hope I will be in good shape for that. I hope the cycler session on your own goes real well. I hope you get to feeling good too. I am sure that soon it will come to you automatically. Will say a prayer for you to have a good first solo exchange on the cycler.
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Best of luck Deanne. It's probably better that you still have to think through each step because you're less likely to make a mistake that way.
:waving;
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:2thumbsup; Good luck!
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Good luck Deanne! That is really fast for training and then going off on your own. Follow the directions step by step and you will not have any issues with the cycler. I will preface my next comment with the fact that I use the Baxter cycler; put the drain bag in a big plastic tub. I have found that sometimes the drain bags leak from the sample tube. If they are in a plastic tub, no big deal. If they are sitting on your floor it can be a mess.
Other than that, over time it will become second nature and you won't even think about it.
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Something else to add to my shopping list - plastic tub. So far, so good. No problems setting up or connecting. I realized after connecting that I left my phone on the charger in the living room. Oh well! Not gonna disconnect to go get it. Draining was a bit of a problem (very slow) when my nurse was here but it seems fine tonight. Hopefully I'll be able to sleep.
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Deanne , you will be absolutly fine. Keep looking at your manual when you set up, it will take a while but then it will come as second nature. My husband has a baxters machine, to start with it was scary, have you had any alarms yet? they certainly make you jump and your heart pound but you get used to them. They are easily sorted. As for leaks from the sample tube, we always put clamps on them. . I ended up with wet feet this morning, we use two drain bags, we use 3x2000 bags and a last fill of extraneal. I forgot to close one clamp this morning befor I cut them in two and whoosh "wet feet". A plastic tub sounds a good idea. Good luck with it.
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My first night was ok, but painful. No alarms. I'm not sure which was worse - the drain pain or anticipating it. The anticipation kept me awake, and when I finally fell asleep, the pain woke me back up. My nurse changed my setup to tidal today to try to eliminate the pain. The good news is that it's working well so I can be dry during the day. I've lost about six pounds of fluid this week. I'm done with training now, and on to once-a-week appointments.
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Sorry you had drain pain Deanne. Sounds like you are working it out though. Hopefully it will become second nature soon and you will get good results. I certainly hope I can do as well as you seem to be doing. You seem to have figured it out very quickly. Wishing you the best.
:thumbup;
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Just for grins, here is a picture of my setup;
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I was wondering what exactly they are looking for as far as the home visit goes. Just to make sure we are not hoarders? :)
Seriously though....how OCD to I need to be with the cleaning? Thanks all!
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I was told that they need to check where you are going to keep supplies, check the room that you are going to use and see the general layout of your home to give instructions to the person who is going to deliver supplies. I will find out for sure on Thursday as my PD Nurse is going to visit then. Its the day after I have PD Catheter placement and a fistula put in so I hope I am in ok shape then. If not my wife can handle the visit I guess. I will try to update after the visit on Thursday.
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They will be checking that you have adequate storage are for all of your supplies, you have a workable work surface for when you are connecting and disconnecting, the location of your machine (if you are using the cycler) is acceptable - not too low, and just the general setup you have to work with. My team checked my house when I first started, but have not since we moved a year ago. I guess they trust me to behave >:D
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My nurse came with a checklist. She checked:
- Supply location
- Cycler is plugged directly in to wall (no extension cord)
- Confirmed I can close the door to the room where I'll do dialysis - necessary to block airflow. No windows or air vents are allowed to be open during connect or disconnect
- Adequate lighting (she asked me to add an additional light)
- Adequate work space
- Anti-bacterial soap and paper towels in each bathroom I'll use
- Distance between cycler and bathroom (for late-night trips when I'm connected)
- Height of cycler compared to height of bed
- She had me connect and do a short exchange to make sure I followed all steps and everything worked correctly
- How I'll handle late-night emergencies (dog sometimes has to go out during the night)
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Deanne, are you using the Liberty Cycler from FMC?
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Ed and I use FMC here in Cheyenne WY. He uses the liberty cycler and has for the last year.
They noted how many kids and animals we had that lived with us along with what the others mentioned.
I will try to answer the hoarding question. We (Ed and I) have 4 children, 2 inside dogs, 3 cats in a 4 bedroom house. We moved the children into the 2 identical sized rooms when Ed went on to PD, before that the girls shared the big bedroom and the boys each had a bedroom. Now the the piano and PD supplies have the big bedroom. We homeschool so the kids are always home, and we have lots of extra stuff because of it. We have bookshelves everywhere, with tools, paper, fabric & craft supplies, sheets, even soccer balls and of course books everywhere. We have 2 frigs and 2 freezers in the house. We keep our cow's grain and alfalfa bags in the house by our printer (we were having a pest problem when we were keeping it in the barn). We live in the country on 40 acres this time of year we get flies trying to come inside so we hang fly paper by the front door and the the kitchen entrance.
We had the nurses out 2 weeks ago for Ed's 1 year house check and my start PD check. they saw all of this and didn't say anything.
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Thank you everyone for the input. :thx;
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I'm on the Liberty cycler, too. I have two cats & two dogs. The dogs sleep on the bed consistently, the cats sometimes do, too (depends on how b*tchy my dachshund is at the time). I was open about it with my nurse and my dachshund "trained" my nurse throw a ball for her. One of the issues we talked about was how to move quickly in the middle of the night when Tigger (yorkie mix) needs to go out because he'll pee in bed if I'm not fast enough. I felt no criticism about them being in bed with me. She asked that they not be in the room when I connect/disconnect. For the most part, discussions were about how to work dialysis in around my normal routines instead of trying to change my normal life to suit dialysis.
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That's great to hear. I have heard other people say NO PETS in the room at night with the cycler, EVER.
That cats will knead the warm bags and make holes. Or that pet fur anywhere in the room is a risk.
Good to know you can still sleep with your kids!
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I have 3 dogs and a cat, and my team knows about them. The only thing they have said is not to have them running around my feet when I'm connection and dis-connecting. I try to observe that admonition, but occasionally they sneak in :laugh:
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I have a Shih Tzu and he is commanded to get in his chair on the far side of the room....BTW Shih Tzus don't shed and he gets a very short hair cut every 2 months.
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Hey Deanne,
I was on a Liberty Cycler when I was on PD. Overall it worked well. I did have a love/not really hate relationship with it. Being so automated there aren't enough options to tell it of things that go wrong in the night. But it did allow me to be able to work a full time job since I cycled at night and lived normally during the day. During my time off I did tend to do more manuals during the day and at times didn't use it and just replace it with more manuals. It is nice to have the options available to you.
You do adjust to it. Ours was close enough to the bathroom to drain into the toilet. That was nice. Plus my wife came up with the idea of getting a wheeled, two shelf cart that allowed for the cycler on top and bags down below. Being on wheels we were able to roll it around and use it in most of our rooms. That freedom was very welcome.
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Deanne, how are you doing with the cycler now that you are a seasoned veteran.
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I don't think of my self as a seasoned veteran yet. It's going ok, but not perfect. Drain pain is still a problem and I'm noticing some weight gain already, which I am NOT happy about! My fill volume is 300 mL in the mornings and the last two evenings, none of this drained. Instead the drain pain immediately kicked in. I dealt with it as long as I could, but hit bypass every time for that first drain. It seems like there was just nothing to drain, so I guess I'm absorbing that 300 mL during the day. It might explain the weight gain.
It's a bit of a hassle dealing with the dogs and cycler. I'm very rushed to disconnet quickly in the mornings. I ordered a box of sterile gloves from Amazon that should help a bit. I've had to get up during the night a few times to take Tigger out. The first time I didn't get him to the door in time because the tubing and power cord got under the wheels and by the time I got it out of the way, he'd peed on the floor. After that I started to make sure everything is tied up & out of the way of the wheels before I go to bed.
Constipation is becoming a challenge, too. I've been taking three colace at night, but it seems that isn't enough. I read through a bunch of messages here about how to handle it and will go get some miralax today. My UF has also dropped from where it was at the beginning. Maybe just because I don't have that much extra fluid anymore?
Tomorrow is clinic day. I'll see my neph and get labs done. I'm dry during the day so far, except for that 300mL, but with the dropping UF and the fact that the 300mL from the morning isn't draining, I suspect I'll be asked to add in a manual exchange during the day. My nurse mentioned it as a possibility several times and I think it was her way to prepare me for it. She did say that if I have to do a manual exchange, she'll have me do it around dinner time so I can still be dry during the active part of the day.
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Here's hoping they get you adjusted correctly Deanne. I come off the cycler in the morning with a full 2L that I drain 3 hours later. My UF from the cycler is typically low or negative, but it is not unusual for my manual drain in the morning to be 3500+. By the time I have everything off, I'm at 1400-1600 for my UF. My Neph hems and haws at my cycler UF, but is ok with the overall numbers.
As for being constipated, I do both the Colace and MiraLax and it keeps everything moving. :laugh:
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Hi Deanne!
I was just wondering how everything is going with the cycler. Do you like it a lot better than Manuals? Are you having any pain?
Hope all is well! :bestwishes;
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I still tend to have drain pain. I'm using the tidal program and it helps for the most part. I'm dry during the day, with only a 100 ml fill, and get a bit of cramping towards the evening. I think this is after I've absorbed that 100 ml.
My yorkie mix is *not* my BFF tonight. The little bugger said he wanted out immediately after I connected tonight. I learned the hard way that pulling the power plug at that point causes the Liberty to restart the entire setup process. I tried running through it with the supplies I already had connected but it knew I didn't have enough solution so I mostly had to start over. I'm waiting for the bag to warm now so I can go to sleep. If I'd been thinking clearly I would've just added a bag instead of replacing the heater bag.
Not a happy camper! Anyone want a neurotic, blind, brain-damaged, lying (he really didn't need to go out) yorkie mix?
Last week was my first PET and KT/V tests doing manuals for it. I have to repeat it this week using the cycler. I'm hoping my dwell time will be shortened. 9.5 hours in bed every night is a long time.
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After getting back power with the Liberty, you can restart your treatment. In your Liberty manual there on page 196 explains the procedure to deal with a power failure, which is what you have when you unplugged it. As for wait for the bag to warm up, it will start working on its own or you can press OK for it to start right away. My bags are at room temperature and I don't have a problem with filling without the bag warmed. BUT, you may........
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I pull the power regularly to take the dog out. The issue I found out is if you pull the plug before that first drain or fill actually starts. This time, I pulled it right after I connected but before I clicked "Next" to start the first drain and when I plugged it back in, it went back to "Starting Setup" and then told me to remove the cartridge. Live & learn, I guess! I know it's supposed to wait for the fill until it's warmed up, but after I had to restart the setup, I didn't want to trust anything else, so I waited a while before I let it continue, just in case......
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I get my dog to go "walkie'
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I get my dog to go 'walkie' when I start opening bags and just before I hook up I have him come in. I have a perfect setup. My machine is in my living room. I can get to the computer room, the bathroom, the bedroom, the kitchen, the living room and out the front door about 3 or 4 feet. Of course, it has to do with the lay out of my house. I drain into the toilet. Before I got the machine I had thought about setting it up in the living room, but then I think outside of the box on a lot of things, it's my nature.
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How long is your line to have so much freedom? My bedroom and family room are on opposite ends of the house. I do most of the setup stuff at dinner time and then walk away from it until bedtime. I take Tigger's water away at about 6:00 pm and start to get ready for bed at about 8:00. I send Tigger out to potty, brush teeth, take meds, then send Tigger out a second time right before I plop him on the bed, then mask and wash hands to connect. If he needs to go out after that I need to pull the plug and pull the cart down the hall from the bedroom to the family room. He doesn't give me time to disconnect and it seems safer to reduce the number of connects / disconnects anyway. Draining into the toilet would be nice, but with Tigger's potty issues it doesn't seem practical.
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The drain line on the cassette is about a foot longer than the patient line. When I was in Wisconsin this past summer I was able to order an extension drain line (#026-20036) so I could set the cycler in a place so my patient line was long enough to get to the bedroom and the bathroom and the connected drain lines could drain into the toilet. On my way to the bathroom at night I had to pull the machine a foot closer to the bathroom and move it back when I went back to the bedroom. Mayhaps if you measure the length you need to drain into the toilet your clinic could fix you up to do so. This extension is not for the patient line.
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Thanks for the idea. I don't think it'd work for me since my bedroom/bathroom and door for the dog are at opposite ends of the house - too far for extensions and drain lines. I'd love to see a redesign with quick connect / disconnect options. I'm envisioning something where I could push a lever and have both the patient line and drain lines autommatically and safely connected/disconnected in an instant, so I could push a button/pull a lever, jump out of bed, and go, and then crawl back into bed, push another button and the used pin removed and ejected, reconnect the patient line, and have the new pin put into place for the next connection. It would need to have cartridges of pre-loaded pins. It seems like it would be electronically do-able and it would decrease infection levels by removing any manual contact during connections.
Oh well - It isn't a perfect world. At least I sold my multi-level townhouse long before starting dialysis. Wheeling a cart through a one-level house is much easier than it would've been trying to navigate two flights of stairs to let the dog out at my last home.
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How would your clinic feel about having a long heavy duty extension cord? Since I have had electrical spikes here and messed up my machine, I have a heavy duty power cord with surge protection. I haven't had a spike since....
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A long extension cord might do the trick! I don't think my center would approve but what they don't know won't hurt me! If I plug it in in the living room I bet it would reach both the bedroom and family room. JLM I think you're my new BFF.
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Deanne, just get a heavy duty extension cord, 12 gauge or bigger. That will carry the cycler load without any problems.
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Don't have anything else plugged into that outlet.
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Please note the smaller the gauge number, the heavier the wire. Ya, it's a tad confusing.....
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I wasn't able to get out for a cord yesterday to give it a try. Hopefully sometime this week. Tigger ended up very sick Saturday night, to the point where I thought about disconnecting and taking him to the emergency clinic during the middle of the night. Instead I just kept a close eye on him all night Saturday, and all day yesterday. After all that, I was too tired to move yesterday, so I spent the majority of the day on the couch.
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Oh I am so sorry about Tigger. I hope he is doing better. I have furrbabies too. I don't know if I could love them anymore than I do! :)
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I thought when I got up this morning that I'd be calling the vet as soon as they opened, but he seemed a bit better. He had a couple bites of food and drank some water, and he wanted treats and his squeaky toy. Yesterday he wouldn't even move off the couch when he heard me rattle a treat bag.
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Is Tigger a senior? My Dusty is 11, only he doesn't know it. What a guy....!
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He's only 9, but was born blind due to neurological issues. My vet said he was probably deprived of oxygen during birth. I don't know which of his other idiosyncrasies are also due to brain damage, like a drinking problem and inability to always remember that the correct order is to go outside and then potty, and that it's a bad idea to bite people. He's really a very good little lap dog. His oddities are easier to handle than my hyperactive way-too-smart dachshund. I just need to watch the time and take away his water by about 6:00 and realize there are still times when he'll need to go out during the night and he needs to be escorted to the door. I have a dog door but he can't be trained to use it.
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He is sooooooooooooo lucky to have you to love him.
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I am so glad he is doing better! :-)
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Deanne, now that it has been a little while since you've begun PD, are you pretty happy and comfortable with how things are going?
Love to Tigger. :)
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I think it's going very well overall. My biggest concern before starting was that I wouldn't be able to live a "normal" life. This isn't the case. I still need more sleep than most people seem to need, but I'm not sure if that's because I started INH again, if it's due to kidney failure/dialysis, or if it's just the way I am. I'm able to think more clearly and I'm able to participate at work more than than before I started dialysis. Before I started, I'd see a meeting on my calendar, groan, and wonder if there was a way to get out of it. Then I'd call in (our meetings are all conference calls), put my phone on mute, hope no one asked me for anything, and surf the internet until it was over. I'm able to pay attention more often now, and I'm interested in picking up new projects instead of dreading them. My appetite is much better now, too. It seems like I'm almost always hungry. My neph she I even looked healthier just a couple of weeks after starting dialysis. I think the bags under my eyes are gone and I look younger.
My first KT/V was great and my nurse said my first labs post-dialysis were perfect. My blood pressure needs to come down a bit more, but it's headed in the right direction. I have diet restrictions, of course. I don't like these, but the aren't as bad as I thought they'd be. It's hard to stay away from dairy foods, and I'd kill for a Diet Coke and big slice of pepperoni pizza (extra cheese!). I try to focus on things I can still have instead of thinking about what I can't have.
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I am very glad to hear this, Deanne! I am so glad that dialysis seems to be doing what it is meant to do. :2thumbsup;
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I enjoy a diet Coke occasionally and pizza. We have a place here that sells a 2 slice plate (Actually a half of a medium pizza) I eat one piece and take the other one home and toss it in the freezer and a week or so later warm it up and eat it. A month or so later I'll do it again. My phosphorus is always in range and I don't take binders. I'm not a milk drinker and I don't eat a lot of cheese (Hard to believe 'cause I'm a "cheesehead") I'm lucky that way.
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Hi Deanne,
I have been doing pd for a while now. It was hard getting adjusted. Hang in there, it get easy as time goes by.