My first night on the cycler

[Deanne]

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.

[MooseMom]

    

[Shaks24]

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.

[Big E]

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.
 

[okarol]

  Good luck!

[Joe]

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.

[Deanne]

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.

[billybags]

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.

[Deanne]

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.

[Shaks24]

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.
 

[Joe]

Just for grins, here is a picture of my setup;

[Bambino_Bear]

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!

[Shaks24]

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.

[Joe]

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 

[Deanne]

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)

[Shaks24]

Deanne, are you using the Liberty Cycler from FMC?

[Sydnee]

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.

[Bambino_Bear]

Thank you everyone for the input.   

[Deanne]

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.

[okarol]

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!

[Joe]

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 

[JLM]

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.

[highway61]

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.

[Shaks24]

Deanne, how are you doing with the cycler now that you are a seasoned veteran.

[Deanne]

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.