So, for anyone out there who uses the Baxter Amia cycler. I started using the cycler October 26. Since then, I've not had one night where the cycler didn't wake me up during at least 3 of the drains. In order to make Amy (my nickname for the machine) happy, I have to actually get out of bed and stand up for the patient slow flow to resolve and the fluid to completely drain out. If I do manage to get through a drain while asleep, it doesn't drain but around 750ml of the 1000ml that the "fill" put in. So I've had to set my alarm to go off as the final drain starts, so I can stand up to make sure all the fluid drains out. Needless to say, waking up to alarms 3-5 times a night is not ideal. I've tried rolling on all sides, my back, my stomach, everything but standing on my head, and the alarms continue. My PD nurse says she thinks it's going off because of the reduced original volume of fluid I'm putting in during the fill (1000ml). But if I'm laying down, and the cycler drains 750ml of 1000 how would it not drain 1750 of 2000? Not seeing how the total volume would cause the alarms for slow patient flow. I'll probably put 2000ml in one night just to test her theory. If anyone else has ideas of how to make "Amy" happy so I can get some sleep, I would definitely appreciate it.
Now all that being said, the Amia (Amy) does make this easy to do. It's a tad time consuming. Takes about an hour for the entire process up to when the first "fill" begins at night. Then disconnecting in the morning is quick and easy, about 20 minutes total, including the extreme hand washing my pd nurse requires before disconnecting. The supplies from Baxter are fairly easy to use as well, though it would be nice if I had a third hand when putting the "cassette" into the cycler. I found the setting to cause the screen to go to sleep after a few minutes, so it's not glaring like a neon sign in a bar like it did the first couple of nights. And I can sleep through the sound of the machine now, though it sounds like a refrigerator motor that needs oiling. I just pretend it is "white noise".
So if anyone wants to join the Amia user's group, let me know. We can compare user notes. I've JUST started looking at the humongous manual that came with the machine. I know there's still lots to learn about it.
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RonZone
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Hi RonZone, I feel you, my husband has been using the Amia cycler for the past 2 1/2 years. I am the one who connects and disconnects him every single day, so if you have any questions I will be more than happy to help!
Regarding the alarm of the first fill, there’s a mode called “tidal”, your PD nurse can set the initial amount of fluid the cycler will be looking each cicle and will empty all the remaining effluent you have in the last cycle, in that case you can be able to sleep throughout the night and just wake up 15 minutes before your treatment ends in order to move and drain correctly. This mode can only be set by your nurse using Sharesource (Baxter software used by your cycler).
Count me in, I will gladly share my experience using the Amia cycler. The first month it took me almost an hour to set everything up, now it takes less than half of it (included ding the cassette test and the prime).
Oh wow, so there are more of us Amia users out there! I will ask about the "tidal" setting if different from what my nurse tried already. This is her first experience with the Amia, so I think she's just guessing as well at this point. I wish they would allow some user control of this thing, so I'm not so dependent on the nurse just to try something and have to wait 3 days for a response when I ask. But I guess they have their reasons. They won't even allow me to call Baxter folks (other than the technical support line, who said "ask your nurse"--sheesh). Mine is not only alarming at the first drain (out of five total during the night), but it can alarm at the first and third, or the second and fourth, or the first and third and fourth. Seems there's no rhyme or reason. What my nurse tried was to reduce the "Expected Drain Percentage" from 60% to 40%. Not sure if that relates to "tidal" or not. I'll have to do some reading in the manual unless you know.
The reason it takes me longer to do the full connection is that I put everything that I have to do in that amount of time, including going to the bathroom, taking evening medication, brushing teeth, putting on PJ's, and doing the "extreme" hand washing that my PD nurse has me to do before doing the actual connection. That hand wash technique takes a good 5-7 minutes. So the time I indicated is "padded" by some regular nighttime stuff. Note: It took me an hour and a half the first couple of nights, so I am improving And I keep my tablet on with the news or some show playing so I can glance over at it while I'm waiting for the little spinning "loading" graphic to finish while loading the program, or during then 4 minute cassette "test".
Oh, and my pd nurse has me cleaning the table that the cycler sits on, and the table legs, and the every inch of the entire cycler itself with a 100:1 bleach water solution before every use. I do that first so it's drying while I do my other nighttime chores before I turn the machine on, but it's included in that hour. Do you have to do that?
Bless your heart for doing this all this time. Nice to have someone to share notes with! Hopefully other's will join this thread.
It is convenient for the Clinic and safe for the patients that this software is managed only by your PD nurse, she is the one that knows how you are doing and also that’s a very good reason for keeping good contact with her. That’s what I do, I’m her eyes and she is my boss!, lol! I keep a register of doctor visits, Rx changes and any other issue my husband has, in that way if you have any health issue it can be better solved. Your dialysis clinic should have a nurse on call, it is not ok to wait that long for a response. Things can go wrong quickly. I don’t call my PD nurse everyday, but I know for sure that if I call her, she will help me right away. Oh boy!!!!, and it happened, at first we had all kind of issues with our cycler!, so I know pretty well how to deal with it, specially alarm issues 😬😬 I learned the hard way.
Regarding the cleaning I use these wipes, they are great for cleaning the table, (or cart in our case), I’ll send you the picture so you can use them as well.
Thanks for your kind words, it will always be my pleasure to help!, I have been researching and learning PD tips for almost 3 years, I can gladly share them with you!
Hey, thanks for the tip on the wipes. I'll run that by my pd nurse and see what she says vs paper towels and bleach water. As for the software being managed by the nurse, I guess since I'm a tech guy, it just bothers me that I can't go in and make adjustments as I need to rather than having to go through the "boss" to get it done. At this point, I know as much about my machine and my treatment as my nurse. But I do understand that not everyone would be able to do those kinds of things, so that's why it is what it is. I'm just used to doing things for myself for the most part. I guess this is part of the "letting go" process in all of this. I don't get to control as much as I would normally do any more. I would still like to get in there and tweak it a bit.
So tell me, how did you and your husband finally resolve the "patient slow flow" alarms issue that I'm getting that's waking me up 3 out of 5 drains?
Have you tried the "Tidal Mode" that Erifre mentions below? I have not as of yet, but will ask my PD nurse about it. Again, wish they would let me have access to the program that controls this thing so i could try things myself without being so dependent on the nurse. Oh well. It is what it is.
Baltoadv, Darlenia suggested putting the cycler higher in relation to me when lying on the bed. Mine is currently a tad lower where the top is about even with the top of the mattress, so once I get my new one tomorrow (the first one died last night), I'm going to put it higher if it's still getting the gosh awful alarms with each drain.
We have the tidal mode, this allows you to keep a certain amount of fluid and not to drain completely. The % left depends on how you drain. That will be set considering what kind of transporter you are, some patients are slow transporters, like my husband, which means that the most effective part of the treatment drain occurs in the last 2 stages (drains 4 & 5), which may be your case, I’m telling you my husband’s experience, medicine is waaay out of my alley, I am an Architect. 😬😬, but my PD nurse has been a true mentor and my best teacher regarding a lot of issues, I love her!
The second thing he does is that when he is draining for the first time, he moves a little bit, as if he was kind of marching, I know, it sounds silly but works for him, (I don’t recommend much doing this now due that your catheter is new, that’s why you should be almost in a flat position to avoid the movement of your catheter), and try to lay down on the side where your catheter is (not on the transfer set), in that case, you will make sure that the cycler can drain you correctly.
If you use the PD belt, make sure that the transfer set is correctly attached to it, and straight to avoid any occlusion, if not, there’s a Baxter cord holder, which is a type of necklace that keeps the patient line straight. I got it at Amazon
Last but not least, try to keep a healthy diet to avoid constipation. This can affect your drains as well. Check your liquid intake, you can discuss this in your monthly checkup at the Clinic with your Nephrologist and your renal dietitian.
Check your progress with your nurse she needs to keep close contact with you and touch base in a frequent manner. You are just starting to use the cycler and maybe she will need to discuss any adjustments with your Nephrologist.
I'm going to ask about that "Tidal Mode". And yeah, it seems I maybe a slow "drainer" I'll ask about that as well. Marching, while lying down? Interesting. Heck I'll try jogging while lying down if it will help. But that's for the first one while you are awake. The plan is NOT to be awake during the drains, so do you guys start early enough in the evening so as to always be awake for the first drain, then go to sleep after that and sleep through the remaining 4? I've tried laying on all sides other than standing on my head and the alarms still go off, but as I mentioned below, the tech at the cycler company I spoke with last night said it sometimes take 2-3 weeks before a person's system get's used to the "process" of the cycler exchanges for it to settle down and the drains become easier. Hopefully that is correct info.
I'm not using the PD belt. I do have one of those baxter neck cord holders that I use for the shower, so I might try using it at night, though I don't think I'm doing anything to the line, as I'm awake after the first alarm goes off and make sure everything is ok, but no matter what I do, the alarm keeps happening. Hopefully "Tidal Mode" will fix this. Hopefully. If not, I'm also going to have a discussion with my catheter surgeon.
I really appreciate all the tips. Marching. Too funny. Hey, anything is worth a try!
Oh, no, sorry about the confusion, marching before going to bed, not lying down. Just one minute makes a huge difference. Just move your legs a little bit, I don’t want you to feel a cramp !
Oh, ok, but I was looking forward to marching tonight while lying down Hey. I'll try anything at this point! So just to get this straight. Does he do the marching "before" he does the first fill, or after? And the marching helps with the first drain? Is that right?
His treatment includes 300 ml to stay in his belly the entire day, so as soon as he gets home (he works full time - he is a civil engineer) 6 ish, he has dinner and then before the first drain he starts marching for 1 minute max, then he goes to sleep. It is kind of rare to get an alarm, unless he folds his patient line.
Ok, got it. thanks for the additional detail. I have totally done something similar except more like pacing instead of marching during the actual drain. So we're in the same ballpark. One more question. How long is his treatment? Mine is currently 5 exchanges lasting 8.5 hours. Since he's awake for the first drain, I assume the last drain happens well before he wakes up to go to work, right? Then you just let the machine rest until you guys get up and start the disconnect process. That's what I'm doing currently, except because of the alarms, I have to stand for the last drain, then go back to sleep, still connected, then wake up later and go through the disconnection before getting ready for work.
He has a 9 hour treatment, 5 cycles. I set up the cycler around 7:30-8:00pm max so he can be able to wake up before 5:00 I wake up a little earlier to check that everything is ok and that he wakes up in order to march again. Try to drain the best you can, if not, the remaining effluent is absorbed by the body and you could have problems like swollen ankles or weight gain. Remember dextrose (PD solution) is line sugar.
Dialysis is a complex process, and it drains a lot the patient energy, you will experience good days and others not as good, so take advantage of the time that the treatment last so you can rest correctly. That’s why I encourage you to talk to your nurse and your Nephrologist to check that your catheter is placed correctly. I assume so because you already had the training of the Ultrabags (the 2L o es or manuals). The catheter adjusts and reaches its full potential once you get the correct treatment prescribed by your Nephrologist.
Oh wow, reabsorption. Had NOT thought of that. I'll be sure to make sure to drain as much as possible. So he's doing 9 hours. Wonder what the average time is among folks. We might have to do a topic with a survey Yeah, once I get over the healing process from monday's hernia surgery, I can get more of a steady schedule going on all this and hopefully things will settle in a lot more. But I will definitely talk about catheter placement my next visit to the center.
Yep and if you are constipated is even worst, the bacteria of your digestive tract will crave that sugar and you don’t want an infection. Stay active, rest at least 7 to 9 good hours, and cheer up!, God (or whomever you believe in) provided us with a 3rd kidney, and that’s the peritoneum. Life is not over when you are on dialysis, at first it is a lot, but once you start going through the process you learn that it is manageable. I’m sure you’ll get there!, if you need anything, I’ll be more than happy to help
Yep, that's the same one I have. I can't put it on my nightstand, had to get a table to put 6 feet from my nightstand so the patient line would reach the potty I'm adding you to my "Amia" user's group list I'm in the US, are you? Not sure if this machine is available in Europe.
I got a wheeled cart, the handle helps my husband to do his “one minute marching routine before starting the first drain. It is also convenient because I can have extra bags, cassettes and extensions in case I have a problem
yeah, I have a temporary table right now, but after my hernia surgery heals, and I'm back on the cycler for a while and know it's going to work as desired, I'll look into a cart like yours, though i doubt I ever move it once it's in place. REALLY appreciate the photo. Yep, that's my machine! The next thing for you to do is do a "how to" video to show how to "unwrap" the cassette, heater bag and all the tubing after taking it out of the bag and getting ready to put the organizer into that little side holder on the machine. I get the tubes all wrapped up around each other and it becomes like a messy wad of yarn There's got to be a procedure that makes that a bit simpler than my unorganized brain has come up with. Like step one, step two, step 3. The onscreen instructions simply choose to ignore that procedure and leave it to the user to fumble through it without knocking the green cap off the patient line (which is way to easy to do in my opinion--you would think it would be put on a little tighter).
we are in the US as well. I think it is available in Europe too. I know it is not available in Mexico and South America ( I know that because we traveled to Mexico and I had to get some adapters and I was told that there was no support for the Amia 😕
The "patient tube" that connects me to the cycler is about 20 ft long, which is just long enough to get to anywhere in the bathroom and my bedroom, but unfortunately not long enough to get to the fridge for a late night snack when those darned cycler alarms go off So yeah, it's sorta like being on a long plastic tube dog leash.
Hey, I actually, before I got the cycler, had the PD nurse loan me a "cassette" (the thing that all the patient line and drain line go into inside the cycler when it's pumping). I brought it home and taped the patient line to me like it would be if I were connected, then, put the "cassette" on the floor in my bedroom next to my bed, then extended the line out and walked into the bathroom far enough to be able to sit on the potty (an important device to be able to reach in the middle of the night). I then looked to see where the cassette was in my bedroom after I pulled the line tight. That's where I put the table to put the cycler on. It wouldn't reach all the way to the nightstand where I had intended to put the cycler, so I had to put a table against the wall (next to the boxes containing my PD solution) for the cycler to sit on. I can still see and hear it from my bed. But I have to get up to push any buttons I might need to push at night, which once I get all the alarms sorted out and quieted down, I shouldn't have to do anything all night. That's the plan anyway. So see if your PD nurse has a "cassette" or whatever they call it for the machine you will use she can give you once you get closer to time. The line length might be a tad different for yours. Or you can have your nurse measure the actual line if they won't loan you one.
We're having the same problem. I know the alarms tell you when there is a potentially serious problem, but it's becoming such a problem that we can't get enough sleep. Husband is trying to work full-time at a new job and between that, being dependent on a machine for his health, and that machine seemingly being a torture device, we're on our last rope.
How long has your husband been on the cycler? When I spoke with the tech about the "Blue Screen of Death" error I had last night at midnight, she said that it takes most people two-three weeks or a little longer for their body to get "used" to the exchange process using the cycler, and after it does, the alarms stop going off like I'm experiencing. I have to take a month off for hernia repair starting monday, so I won't know until I start back and go through the alarms again for a month, if the tech is right. The tech also said that some folks end up having to have their catheter repositioned by the surgeon to help it drain better and elevate the alarms. So there's a bit of finger pointing here as to whether it's the cycler being to sensitive, or the surgeon not putting the catheter in exactly the right place. So you might have a talk with your cycler's tech support, your PD nurse, and then your catheter surgeon to see what suggestions they offer. Now last night, I did find that laying on my left side, with knees slightly bent, did not set off any alarms during that drain (I was awake for that drain). So sleeping position does have something to do with all this, I'm sure. But how the heck am I supposed to make sure I'm in exactly that same position during every drain while I'm asleep? I plan to grill both my PD nurse, my PD surgeon (who is also doing my hernia repair), and ask others on this site until I discover what will shut this thing up so I can get some sleep. I also work, which is difficult to do when you feel like a zombie! Tell your husband he's not the only zombie out here
Ahhh, wish I had got to do that instead of doing two separate surgeries, one for pd catheter and now one for hernia. Oh well, I'll get through it. I actually will stop PD for a month while healing. I had just started (3 weeks ago), so the plan is for my natural kidney's to keep me going until I heal up. (keeping fingers crossed on that!)
Holy cow...how does anyone who goes into the office and works full time manage all of this? I know I'll have to take time off for the transplant but this seems to be a never ending cluster at least at first. I really really like sleeping and can easily sleep 11 hours on the weekends. Did it go smoothly for anyone?
Just pretend you have a new baby in the house and that it will take about 6 months for it to sleep all night and I think you'll have it figured out (based on current experience The good thing is that you can set up different programs in the cycler, like 1, 2, 3, 4, 5, 6 and have them have different lengths of time. I also like a lot of sleep and plan to ask my nurse to set up one program that is going to be 11 hours long! Right now she's got it set at 8.5 hours, so what I do is after the last drain, just let the machine stay at that stage and go back to sleep. When i wake up, then I hit "continue" to finish up everything it needs for me to disconnect and shut the machine down.
So you will have to be prepared for this to take some time in the evening before you go to bed. It takes me an hour to do all my getting ready for bed and getting hooked up to the cycler before my head actually hits the pillow. So I miss my hour of tv time, but that's ok. Days are getting shorter so I'll get that tv time earlier in the evening, or after I'm in bed on my tablet with Netflix or Prime.
We try to get started at 8:30-9:00, and it takes 30-45 min to get everything sterilized and ready. Then we rock and roll and the cycler is done (8.5 hours total) at 5:30-6:15 a.m. Thank goodness for the TV in the bedroom!
During the week, it's brutal esp when you've been awakened by that torture device 3-4 times (out of 6 cycles) overnight. Weekends are better, and we do what you said and leave it at post-last-drain 'til we get up.
You and I both need to really figure out what will silent these alarms. One person suggested putting the cycler higher than it is now to see if that will help. And have you already tried the "tidal" setting? Sorry if I asked you that already.
horsie63, I am on a cycler and MAYBE get alarms once every 3 weeks. I've been on PD since January and sleep completely through the night. Don't get discouraged! A few people's problems will not necessarily be your experience, and the more you get worked up about it, the more stressful it will be, and no one needs that. By the way, I am your size and have no problems with the solution amount in my belly (1500ml over 4 fills overnight), so try not to worry that your size is something to be concerned about. Hope this helps!
Hey, yeah, I hope folks understand that "mileage may vary" applies to each situation. Just a note. My cycler actually died last night just before hooking up, so it seems it had issues. Once I get the new cycler in today, and give it a test drive around the block, HOPEFULLY it will offer fewer alarms and I can get to having your experience. Thanks for posting this, and helping elevate her fears of doing pd based on her size, I couldn't offer any support in that area. I've talked with horsie63, she understands my situation, but it's good to hear from folks who have good experiences with their cyclers, I'm hoping to be one of those very soon!
My Amia gives me one slow drain alarm every two weeks or so. (But I'm doing only 3 cycles, one bag.) And active prep time before sleep is about 10-15 minutes, not counting waiting for machine to prime, etc., while I brush my teeth, etc. (True, I take my BP and other vitals only every other day. You can click "skip," as these vitals don't affect the program.)
So, although treatments vary and different bodies react differently, my guess is that with help from your nurse and nephrologist your situation will soon improve.
And perhaps I might mention: started with Amia the week of my 90th birthday, some 4 months ago.
oh wow! That's amazing! You are a trooper! I'm adding you to my "Amia" users group list of folks to share information and thoughts. I'm hoping I can get my Amia to settle down and let me sleep in the not to distant future. Did you have more alarms in the beginning when you first started using it? And hey, brushing teeth during priming is a great idea! I'll also ask my PD nurse if I have to put in vitals every night.
You are right about more frequent alarms and other problems when I started with the Amia. I must have phoned Baxter or the on duty nurse every other day for the first week or two. It's amazing how much easier it is now. I feel I'm in control. I can also anticipate the instructions on the display --for example, set up and install the cassette and then just click through the step by step, without waiting for the voice instructions. And yes, certainly, make good use of your time while the machine primes.
For me, the Amia has been a blessing. Hope things work out as well for you. No one suggests that dialysis of any sort is a piece of cake. But a good nephrologist and a good nurse will want to help you make the process less onerous.
Reading some of comments in RonZone. I am having trouble completing drains every night. It is impacting my sleep. Also having problems with fills, usually last fill. Do not get a complete fill because of "Slow Flow". I sometime have to end treatment early because the drains or fills do not complete. Also when I get Occlution Errors on drain or fill there are bubbles through out the lines. I don"t see any fibrin that is stopping the flow. I was wondering if the bubbles would cause these errors.
Hey, through I'd reply to this. You know, I've scratched my head and tried to figure out what actually causes a lot of the Amia errors. Some are just very difficult to figure out to be honest. My nurse says that my "slow Patient flow" alarms are because of the position of the catheter inside my abdomen. Mine only happens during drains for the most part, though once or twice I had a kink in one of the tubs leading to the heater bag which caused a slow flow error, but that error told me it had something to do with the heater bag, which was helpful. That's the only time I've actually had an issue with a "fill". So not sure what might be causing your fill alarms. What did your nurse and technical support tell you might be their idea that's causing the fill alarms?
Now, doing further research myself, I did find that laying on my left side get's fewer alarms than any other position. I definitely can't lay on my back during drains, I get an alarm every time. I only rarely get an alarm when laying on my right side and when i get those, I just turn over on my left side and it goes away most times. I used to have to get out of bed and stand next to the machine to get the alarm to stop, which it did after about 5 minutes of doing the "PD Dance" as we call it, shaking the fluid down to where it can be picked up.
Also, I discovered that I had not been drinking enough water. Once day I tried drinking like 4 12 oz bottles of water during the day and evening, just to see what it would do. Surprise, no alarms. I cut back to 3 and still no alarms, so that's where I am now and so far so good for the past 3 months since I started that. I think before that, I was just too dehydrated. Back before I started PD, I read that dialysis folks had to limit their fluid intake, so I trained myself to drink less. Seems I over did it a bit. So now I'm having to train myself to drink more. And it seems to be working.
So the crux of the story is, each one of us is different and we're going to get alarms for different reasons. I wish I could say that the docs and nurses and the Amia tech support folks had all the answers, but they never suggested I needed to drink more water. Once I did my UF numbers went from being in the 500 range to being close to 1000 or even over some days. And I have fewer leg cramps now.
I wish I could diagnose you and tell you exactly what to do, but that's just not possible. Use every resource you have, docs, nurses, tech support and your own trial and error to see if you can solve your issues. I'm not even sure what an Occlusion Error even is? But bubbles in the line definitely does not sound right. I would think the machine wouldn't like those bubbles though, let me know what your PD nurse and Amia tech support says might be causing that, and if you need to swap your machine for another one. I had to do that when my first Amia died.
After one month, the PD catheter was laparoscopically repositioned after it was found to have migrated from its correct position in the pelvis and twisted and clogged in the omentum. After one more month, the same complication recurred. Laparoscopy was again used to clear the clogged catheter and reposition it. This time, a testicular prosthesis was sewn to the catheter and used as an anchoring weight for the proper position in the pelvis.
I also read where constipation can be an issue that causes the errors you are getting.
Both are something to speak with your PD nurse and Neph about for sure, and possibly your PD surgeon. I didn't get my "anchored" like they talk about above, so mine may mess up again after a time if it get's out of position again. Time will tell. I'm trying to just enjoy the nights without error. When you get those alarms all night, NOBODY get's any sleep.
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And I keep my tablet on with the news or some show playing so I can glance over at it while I'm waiting for the little spinning "loading" graphic to finish while loading the program, or during then 4 minute cassette "test". 
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