So last night, my cycler completed the first fill, then the first drain, then the second fill, but after the second fill was in place and it was "resting", all of a sudden, I was awakened around midnight by a gosh awful screeching alarm that was like a tornado warning or something. When I got up and looked at the screen I saw the message: "System Error 01309. The device encountered a system error and must be shut down. Touch the OFF button to shut down the device. Touch Help for further assistance."
So I touched help, which gave me the number for technical assistance. The tech told me that I didn't have a choice other than turning the machine off. She said that the machines were refurbished, and sometimes one would have a glitch, while others would have a major issue that could not be resolved and they would have to send me another machine.
Once I hit the "OFF" button, the machine took me to the "disconnect" directions, asking me to mask up, disinfect my hands, then disconnect the line from the cycler to my transfer set coming out of my abdomen. Once that was completed, the machine continued the shut down process. There was still PD fluid left in the warming bag inside the cycler and in the original solution bag. So I had to manually empty those.
So at that point, I turn the machine back on and started the entire nights treatment from the beginning again. The machine started up, and successfully went through the five exchanges, ending with the final drain around 9:30am this morning.
So as with the Windows Blue Screen of Death on a PC, it seems the old "turn it off, turn it on again to restart" seems to work with cycler's too. The tech did say to let them know if this happens again anytime soon and they would send me a replacement cycler. Refurbished of course
Never a dull moment these days, day or night!
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RonZone
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Oh boy!, when that happens, usually after doing what you did, which was correct, you call your nurse to let her know what happened, most likely she would have told you to use an ultrabag (2L bag) to drain after dwelling and start the treatment as prescribed the day after. Be sure to discuss an emergency plan with her mainly because over dialysis is not recommended specially to new patients. That same thing happened to me on Thanksgiving!, the cycler didn’t turn off so I disconnected my husband, put some towels over the cycler to keep down that horrible noise, unplugged the Amia and let the built-in battery drain (2+ hours). I called the day after and Baxter sent me another cycler.
Oh wow, so again, not the only one with these issues. Yeah, I knew I could've used a manual bag to drain, but I was determined to get my dialysis in last night and it had just done the second fill when this happened so I only had one full "dwell" up to that point. And I'm on half volume right now (1000ml) until after my hernia surgery on monday, so hopefully no harm done. I actually wasn't aware that over dialyzing could be harmful, but I can see it if it pulls too much stuff out. That's for that note. Thanksgiving. wow, what timing. I think I'll skip dialysis Thanksgiving night. Ha! How long did it take Baxter to get your replacement cycler to you?
I've never heard over dialysis can be dangerous. Kidneys work 24/7. Never heard of anyone with normal function being endangered by kidneys over working. When I started Nocturnal hemodialysis I was dialyzed 8 hrs/night, 6 nights per week. There are of course 2 different sets of thinking on over dialysis. It can be dangerous and that with proper management of diet, fluids, blood work it cannot damage people. Most people will only get 5-10% of Kidney function from dialysis. When doing my nocturnal home hemodialysis it was determined I was getting about 50% function.
BTW, most home hemodialysis machines are refurbished. Say if the control unit needs replacing they will send out a new one and patients have to swap them out. In center machines have biomedical techs who service the machines. Hey, they break down, like any other piece of machinery. Blessings
Hi! 😊 for a PD patient it does, according to our Nephrologist. The peritoneum is a smooth membrane that has to be filled and drain every single night with a considerable amount of dextrose solutions to remove toxins. The main goal of peritoneal dialysis is to keep in good shape this membrane and not make it work with extra solution as long as possible to avoid hemodialysis. Diet, exercise and monthly checkups help the patient, in this case my husband to reach that goal. Some doctors might say that it is a privilege to be candidate to choose this kind of treatment. I have no training at all regarding to Hemodialysis, I only gave my two cents about the training I received from my husband’s Nephrologist, his PD nurse at the Dialysis clinic and the Transplant Center. I am only sharing my experience with other family members, caregivers or patients that started this treatment to keep them living. For us it was difficult to process the huge amount of information given at first. I love this community because everybody can share their opinion and for me, personally gives me the opportunity to give back a little bit sharing the tips I learned throughout these 8 years working with CKD and now PD. Thanks for taking the time to reply, the more we talk about dialysis, the more we learn! 😊
Oh, now I understand your meaning. Makes sense. I went to a new cardiologist years ago. He kept telling me my low bp (chronically for me for 5 years at that time) was from over dialysis. He wanted me to hold any treatments for a week and drink 2 quarts fluid daily for that week. I'd had both kidneys removed years earlier. My nephrologist laughed and kept asking if the cardiologist had meant it as a joke. It surely would have killed me. Specialists often aren't as educated in other specialty fields. I did PD for a bit. Trained 3 days. Four weeks home doing manual, ready to begin training on cycler when my symptoms went nuts. ER labs revealed my creatinine around 19. Doctor put me on 36 hours of continuous PD with cycler and my creatinine shot up to 25. Did one 4 hr hemodialysis session and creatinine dropped to 17 all other labs were similar fluctuations. Another hemo treatment and all lab values began to normalize. And sadly that was the end of my PD journey 😢. I will note here as well that I had been taking Gabapentin for neuropathy. During my first week in hospital I had toxicity to this med. Was near constant full body twitching from too much of the drug in my system.
Sorry to write so much. I'm a talker and my near 21 years of dialysis has given me some great stories, funny and scary.
I’m sorry you have been through that much, but the most important thing is that you are up and fighting. Thanks to you and other members stories can be shared and all of us can learn. The best way to endure is working together, sharing tips, encouraging any patient, caregiver or family member to research, to get training and to help physicians provide the best treatment. It’s ok to talk a lot, don’t stop sharing, that will help all of us have hope and will keep you going on. Take care and keep posting!
Wow, I've not heard of anyone with Creatine that high. Holy smokes. Was that your "Creatine Clearance" number? Are saying it was the Gabapentin that caused it to go that high while on PD? Or was there another cause of it shooting up on PD? And I wonder why it went up so high on the cycler, but didn't go up during manuals? Any idea?
No, not creatinine clearance, just serum creatinine levels. I never used a cycler. Was still waiting for delivery. Toxicity of gabapentin was due to nò real dialysis clearing it out of my system. While in hospital, doctors didn't stop/hold this med so it kept building up, like a snowball effect. Gabapentin caused nothing but twitching. Was not connected to PD at all, or creatinine, just a side effect of not no real dialysis. Hope I explain this right, Blessings
Ok, still wrapping my head around the whole Creatinine clearance and Creatinine levels thing. I think I'll do a separate post on that and get folks to provide input. I'll include a very interesting comment from my nephrologist at the Fresenius clinic that I saw last tuesday. So what caused your creatinine levels to go so high since it wasn't the Gabapentin?
The failing of my peritoneum to filter out the toxins i.e PD didn't work. I'd had 4 c-sections, gall bladder , kidneys removed, hernia. PD failing caused high serum creatinine, build up of medication as it wasn't filtered out.
ahh, yeah, I can see how all those intrusive procedures would affect PD. That's a LOT. You've definitely been through the ringer. My measly little hernia surgery I'm having on monday doesn't come close. I have absolutely NO place to complain at all!
Ahhh, but its not a competition kind friend. We may all be in the same water... but not in the same boat. Some may be in a yacht while others hanging onto a dingy or drowning. We ALL have a right to feel what we feel regardless of others. This is the beauty of friendship. One day you may be able to give 120% while I may have only 20% strength to give. We are here to lift and encourage. May you continue in doing well.
The first week doing nocturnal we had one of those screeching alarms. My hubby shot out of bed, raced to my hemodialysis machine and in his not quite awakened state and the blaring alarm and dim light trying to mute the alarm, he managed instead to turn the machine OFF! Of course my response was "What are you doing?" LOL.
I am sorry about what you went through. Unfortunately not one of the perks of being fortunate enough to do peritoneal dialysis at home as I did for two years which I loved until it stopped working. It is really a terrible pain in the neck. Especially when you are woken from a sound sleep and then have to tear down and reset the machine. I really do feel for you. It still beats sitting in center having hemodialysis. I felt great on peritoneal and woke up in the morning and went to work and about my normal activities but it stopped working for me. Not so much anymore. I really have to push myself now. I would go back on peritoneal in an instant. I know you were not complaining, just another story about life as a dialysis patient. Wishing you never have another sleepless night ❤️
Yes, absolutely, not complaining, just "stories from the life of" So how did you "know" when PD stopped working? Did you wake up one morning and the machine said "not today, we're done here"? Or did you know by the lab tests? Or did you know by how you felt and by symptoms (swelling, nausea, etc). And what was the experience like. Did it slowly decline over weeks or months or did it decline over days? Did you get really sick? Was it gosh awful, or just sorta awful? Actually I'm going to post this as a new thread so others can add their input. You can reply here or in the new thread. Thanks!
I wanted to provide an update to this thread. Last night, when I was about to connect the patient line from the Baxter Amia cycler to my transfer set (I had them both in my hands, although I had not uncapped the transfer set yet), the cycler warning blasted out again and once again I got the same System Error (what I call the Microsoft Blue Screen of Death) from the night before. I called Tech Support. They said they would send me a new machine. I tried turning the machine off, then turning it back on again, but just a few steps into the process after turning it on again, I once again got the System Error. So I knew not to connect to it, else it would leave me hanging full of fluid. So I simply turned it off, went to bed and had a GREAT full night of sleep!
Now this is where MY situations is VERY DIFFERENT from most folks on dialysis. I still have plenty of natural kidney function to keep me going for weeks without dialysis. I'm very fortunate that I'm in this stage when all this happened, so it's not that much of an emergency. I know for others who have zero kidney function left, this would be a much bigger deal.
DO NOT take my post as a negative toward PD. It is not. I still think it's the absolute best solution for me and for thousands of others out there. I'm just putting this "story" out there as a "day in the life of" as to MY experiences, so folks know what COULD happen and be prepared for it. I've read others who posted similar instances of this happening (See Erifre comment in this thread), so I'm not the first or only to have a machine go belly up. I very much look forward to getting "Amy2" installed in place today when she comes in, and get back on dialysis tonight!
Sometimes all it takes to stop alarms is to reposition the cycler. Most cyclers, when placed higher, do better for some odd reason. I know of some who have their cyclers on top of their chest of drawers. Our older style cycle did fine on a nightstand.
That is one thing I have NOT tried. But will do that once the new one comes in. It might have to wait until after my hernia surgery healing, so it could be December before I get to experiment with that idea, but I will sure remember to give it a try! I'll hang it from the ceiling if it will help get rid of the alarms !
Good grief. So sorry about how much you're going thru, but praise your persistence and especially your sense of humor. Not being technically inclined, you all are scaring the bejesus out of me. But, thank goodness, my son lives in an apt attached to my house and hes my "tech support." He keeps reassuring me that he can handle anything. I'm so blessed to have him around and so blessed to have you sharing all this pertinent information. Thank you for taking the time to do it. It's so caring for you to do it.
The best of all luck with the hernia repair, recovery, and receiving a new machine asap and one that works smoothly without any hitches.
Hey, thanks! I figure out of all the things I could be dealing with, this is very minor. I do want to note that when I called Baxter tech support (available 24/7/365), they provided me with step by step instructions on what to do, so you wouldn't have to be a techie at all to use this machine. It's very simple. I'll probably do a thread on just how simple in the near future. But that being said, I think it's wonderful that you have that support right next door! And not just for tech/machine help. Tell your son we all said "atta boy" for being willing to offer you support. I have no doubt he can handle anything in that role. You are fortunate and obviously did a great job in creating a good relationship with him over the years. And it's good you are on this site (like me and all the others), so you can discuss things with the many good folks on here, so as not to overwhelm your son with all things CKD. He needs some space from it as well in a given week. From what I can tell, you're doing a good job in that dept as well.
Yeah, I'm really ready to get the hernia repair behind me. It's causing more discomfort than the dialysis at this point, especially if I get a bit of gas! And I can tell when I eat something a tad "bulky". I can feel it moving "through" that area, almost like when you see a snake eat a mouse and see the lump moving down it's body I know, that was gross, sorry, it just jumped into my brain Ha!
If you woke up to the machine screeching...it had most likely been alarming for quite awhile first...it could have been as simple as needing to change positions, but because you didn't respond... (not your fault)...the time had expired and the dwell time would not be long enough...so it had you abort the whole mission....and it now needs internal clock reset..( which we can't do)...and the only thing you can do is abort.....You could have had the cycler drain itself tho...on the screen that says "resume" on the right, will just go through steps to disconnect and shut off cycler.......but there is a key on the left says "end" ....that will prompt a screen to have the cycler drain remaining fluid in the bags...BUT FIRST YOU WANT TO DISCONNECT YOURSELF FROM IT. You will have to do a manual drain to remove what is in your belly...I use the "UltraSet CAPD disconnect Y -Set" to drain my belly ....This same thing happened to me when I first started PD...
Actually I just posted an update above. Last night, I was in the process of connecting and it did the same thing, and it was all at once, no build up from small alert to really loud. I assume when you have a complete system failure like that they want you to know it immediately, thus the tornado siren level alarm. Last night, there was no "resume" option, there was only, "Audio Off" to turn off the blaring alarm, the "Help" button that gave me the machines serial number and the phone number to tech support, and the "OFF" button option (I took a photo of the screen to show my PD nurse today). And yes, I have some manual bags around to do a manual drain if necessary. Fortunately, last night, I had not connected, so I had no fluid in me when the fail happened and the cycler gave up the ghost. Hopefully the next machine won't be a lemon and I can get back in business. They just called and it won't be delivered until tomorrow. But that's cool since I'm not in a huge hurry or anything.
Ron I just wanted to thank you for all the time and energy you are using to give us these detailed reports. They are so important to those of us who are trying to decide what dialysis route to take or whether to take any route at all. At 82 its quite a decision to make. How do you keep so calm in the middle of all the alarms etc. Please keep us informed as you continue this journey, My prayers are with you for a successful and easy surgery
Hey, thanks for the prayers! (Say one for my new cycler when it get's here!) But sure. It helps me "process" by writing all this stuff about my journey. I truly hope I don't scare anyone off from the whole process, but at the same time, reality is reality and "stuff" happens, right? Might as well know it can and be prepared to deal with it when it does. Not sure you would've called me calm when that machine blew up at midnight Wednesday night and I had to start the whole process over again. I said a few not-allowed-in-church words, I have to be honest But all in all, I'll get all this figured out and continue on. But I do try not to worry about it too much. Thankfully I'm in a position where I can do that. The day might come when that will not be the case. Sure, I'll continue posting as things move along, the good, the bad and the somewhat not so good looking And the happy stuff as well. I'm going to send you a private note on your other topic. Look for that in a few.
For future reference , the battery is right under the machine and it is quite easy to remove , specially when you have the motivation of the extra loud alarm 😊
Ahhh, another Amia user! Nice to chat with you. I'll make a note. I really appreciate knowing about that battery! The alarm is most annoying. I get "Slow patient flow" alarms all the time. I have to get out of bed and stand up in order for it to make the machine happy so the alarm will stop. Any other issues you've had with your machine? I got one machine, it lasted a week, then went belly up, so they sent me a new one. This one seems to be working ok.
I'm currently on my second machine, however,this is the first time the display has crashed , in regards to the slow flow alarms, i have noticed they get worst if I haven't had a bowel movement, i use to take Miralax to help with that, but have since switched to Lactulose and I have to say it works like a charm and the taste is just like drinking sugar water, be aware that it is quite fast acting, I'd say 2 hours 3 tops before needing to find the porcelain throne 😊
Ahh, ok, let me do some experimenting with anti-constipation products like Lactulose and see if that helps. I've only been on the cycler since healing from hernia surgery a bit over a month, so still learning myself. So I'm not the only one who had a machine die. I understand they're all reconditioned, not new when you get one.
How you doing today, fellow Amia user. Have you actually read the manual. I confess, I have not. There's probably some pretty nifty stuff in it that I should know.
Tell me about your treatment prescription when you get a chance. Like how much fluid per exchange, how many exchanges per night, how many hours. What is your normal set up time of day/disconnect time of day. Do you still work, if so, how's PD working within your work schedule, Just anything you want to share.
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my first day of dialysis at home
