good morning . I going to write about t my connection this is for Ron he wanted to compare the amiable his Machince to the Claria so if any other want to read go ahead if not skip this post . Well last night first night on the Claria machince . Of course with me there always a first the nurse said she never ever had to reenter an activation code. Well she did it took her four times before the machince accepted it.
ok it was time for me to prime it she said well for some reason it skip over me putting in my blood pressure and weight it did have my name she said that ok. She has me just doing 6,000 and only six hours so I’m praying that will be all I do. I put the one bag on the heater of the machince then set another bag of 6,000 beside it she said I’m going to waste a lot she going to have me order small bags next order. But we need to see if I can stay on this prescription.
after I check the bags and had then place them . The machince said press go to start. I did.. I open the door press cassette against all four corner shut the door close handle . Hang the blue organzizer on front of door and close all the clamps on my cassette lines.My nurse gave me a thing for the toilet so I can drain in the toilet . Close large white clamp . She taught me use my right hand the clamp by thumb is to connect to me the far way one last one my pinky is drain line. She also gave me a tip here put a piece of tape over the cassette line cause sometime they come loose from that . Make sure all clamps close . One line I don’t even use.
Then I remove the red line from casssete organizer. A remove clear pull ring from line B. Remove colored pull ring from bag on heater tray. C. Quickly twist my supply line to the solution bag cD break frangible E. Open clamps to solution lines F. Repeat above steps with all bags.G open clamp to paient line.
Press go machince will read priming..
Ok I let the machince prime we set all this up at four so you can prime have it ready Hoya in advance . Until you are ready to connect .
Ok at 10 I went to bed time to connect my machince said connect to yourself and check paient line got out transfer set mask and wash hands one minute clean alcavis scrub one minute on transfer set.connect to transfer set open twist clamp press go machince willl say intial drain but my said 300 ml nurse said push stop then go again I did ok now it said intial drain make sure to pen clamp after connection.
Ok the first drain hurt me like heck again I got up and dance around I had to pinch the tube to stop the pain once but I’m suprised my machince didn’t beep guess I didn’t pinch it that long . Ok drain done then first fill then first dwell one out of three so went through that three the dwell are pretty long the nurse decided to only have ne do a full drain at first because my pain is so bad so she had that set up the other two left some in and at the very end she leaving 500 in me cause of my pain .
Well I don’t know if it common the first time probably us I didn’t sleep but 40 minutes . But I did it so hope I just can sleep with it . At four thirty I was doing all the stuff to unhook Machince said end of therapy. I press the blue down arrow to record the stuff I need intial drain if dwell time
Press go close all clamps and transfer set
Press go machince read disconnect yourself
Mask wash hands out iput on mini cap
Push go machince read turn me off press off toggle switch in back.
When I had any beeping I just press stop and go and it would do what it was suppose to I only had beeping at the beginning . So that it.
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Beachgirl32
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Other than the hooking up it seems rather easy. Do you have yours on a cart? Because of the layout of our bedroom I'm going to have to use the cart I bought and just move it around as needed. It's too big I think for my night stand. Thanks for the post. I'll get mine at the end of the month and will refer back here.
How has your appetite been? Do you think this will make it easier to do stuff during the day?
yes I have a cart I put the machine on and I have a plastic bin on wheels where we put the second bag my cart has a lower shelf but not a middle one and the nurse wanted the second bag in my plastic cart she said it to low on the bottom of my metal cart .With the tubing and since it on a wheel cart I can go all the way across the hall to my husband office where he sit in a lift chair most day if he not on his computer so I can check on him cause he a night owl he doesn’t go to sleep until 2 or 3 am.
No appetite and extremely tired I’m going in today to get a shot if iron hopefully that will help.
Yes it pretty easy the nurse said most of her patients don’t sleep the first few days just have to get use to it. I was so afraid of rolling over kinking the hose but it didn’t happen I was afraid I would get alarms all night but I didn’t . She did tell me my night stand was to low that I wanted it to be the height of my bed or higher I have a high bed.
My bed is kind of high too. I've been forcing myself to eat at least something but the hours dwelling kind of kills that. Once I get my machine and all set up I'll see if I can post a pic of the cart. It does have a top and middle shelf and right now there are some metal baskets on the bottom that I plan on putting the smaller supplies in.
They gave me iron a week or so ago and it's not really helped. And of course I have the horse pills phosphorus binders.
Being on the cycler at night should make it easy for you to go to your appts during the day, and any your husband needs. I've got my monthly doc visit at 1030 on the 15th and am trying to figure out how to do my first exchange and make the dr appt without getting up at 5 am to fill, dwell, drain. And I still have 3 dogs who have to be taken care of. I get a headache thinking about it.
Does the cycler help with your drain pain? Do you still have to do the heparin?
I'm also on the horse pill phosphorus binders. I'm having a hard time remembering to take em while eating. With having to fix my dad's meals and mine, work, and his doc appts and mine, and oh, keeping up two houses two hours a part, those little pills just slip my mind 1 out of 3 times, so I know I'm going to be scolded at my team meeting next tuesday for not taking them right. I'll go in, repent and promise to do better this month. I need to tie a string around my finger to help me remember to take it WITH the meal. Seems taking it an hour later when I think of it doesn't work too well.
That's okay I got the bottle and it sat for a couple of days before I remembered to put it in the kitchen as a reminder. Not sure if it's the dialysis or what but my concentration/memory is shot. Sometimes I forget to eat, well I'm not hungry a lot of times.
I keep my Binder Pills in little jewlery bags and stuff them everywhere...my coat pockets, glove box..etc..Its best to take a bite of food....then swallow pill...then take a drink ...it helps with the "gas" and upset stomach I get sometimes...When I forget to take it with my meal I take as soon as I remember, still helps
That's a good tip to eat some food first, then take the pill. I've not had any "side effects" that I know of other than it causing a tad more constipation. I just get so busy fixing my dad's meals and all that it just slips my mind. Based on your suggestion, I've got a little plastic AA battery case I think I can use as a pill box to keep in my pocket. We'll see if that helps me remember.
Yep...just anything you can carry with you...I also think to get use to taking a bite and wait actually helps remind you to take your pill...lol...at least it does me
Ask em if you can skip that first exchange before your dr appt. Heck I had to skip a whole night the other night because of my dad's dementia. I felt fine the next and then just hopped right back on that next night. They discourage "part time" PD, but hey, I gotta do what I gotta do, including getting some sleep so I can somewhat function with my job. Again, "I" have some say so in all this, right, so I pick my battles, and my dad's dementia an some sleep and work won out over dialysis that one night/day.
that what I did before my meeting with my transplant team I just fill in the morning but if they have to weigh you at any doctor appointment remember to tell them how much fluid you have in you so they can subtract the amount for your direct weight.
Last night was better on machine. I just heard alarm two times when I was doing initial drain I kept saying why am I hearing the beep my tubes aren’t tangle I check them three times then it dwell on me I didn’t open my transfer set duh first time I forgot there nothing going to work if that isn’t open so I open it had pain again in that first drain I actually got some sleep probably cause I had none night before .
Do you use those clips, yours are blue? I use red ones on my lines for the manual exchanges. What are the smaller bags called? I'll want to get those rather than the huge 6l ones if possible. Glad to hear you got some sleep. You seem to have had a whole lot less problems than Ron did at first with Amy. Is the machine loud? I'm concerned it'll keep my husband up as he's a light sleeper.
The amia screams like a banshee when she's not happy with me Hopefully the Claria is a lot quieter. The normal sound the Amia makes when it's filling, draining, or just doing whatever it does to need the "engine" running, sounds like your normal office printer, so I've learned to sleep through that sound for the most part. It helps to have a fan going to help create "white" or "brown" noise to drown out Amy's engine noises. But nothing will drown out those alarms. Oh my gosh. Nag nag nag, until I get up and attend.
I use the blue clips when I did manual same way you did the red and I open the bag with blue clip. Now on machine I just use the blue clip close use the corner to open the bag and I use it if I’m putting heparin in my bag to secure it until I get the meddles in the sponge part on the bag .
I am a very light sleeper I don’t think the Machince is so loud I hear a little noise it more like a wave sound. I will see if I can record it tonight and if somehow I can put a video on here. I thought it would be louder then it was .
I had drain pain again last night twice this time beginning and end . I will have to ask my nurse about the smaller bags .I’m sure your nurse may know or even ask Baxter what are the smaller bag . I see her Wednesday when I bring in my bag to her I will ask I’m just hoping I can stay six hours and just the 6,000 that why she hasn’t said anything again to me about the smaller bag until I pass or fail finger cross
Ron the amia sound a lot louder than the claria I really don’t feel it to bad on claria the most noise I hear us on one of the cycle I think it dwelling but I will pay more attention tonight .
So you get your cycler at the end of March? Well at least you have a day to look forward to now! Once you know your "prescription", you should ask about those smaller bags that Beach talks about in her initial posts before you get your initial cycler shipment. I didn't know they had cycler solution in less than 6000ml bags, 2 bags per box which are pretty darned heavy.
I'll need to ask about that cause the 2l bags are heavy. Since the machine has a heater does that mean no more putting them in a cooler with a heating pad? I still have 16 boxed yellow and 16 green. Too bad they can't be used. I'll keep a few back just in case we lose power but my husband is looking at a battery back up and we have a generator.
Yeah, the machine does the heating, no more heating pad/cooler. I also have a bunch of boxes of manual left that will be going down the drain one box at a time. Baxter said since Covid, they can't even take back unopened boxes, which is a shame. Hey, having a generator would be a plus. I would have to haul my stuff to a hotel room I guess if the power went out for an extended amount of time.
The Solution bags come in 6000 and 3000...Have you PD Nurse change the setup so you can use the 3000...so much easier to manipulate ...the box with still be heavy because there will be 4 instead of just 2, but so much easier to pull out a box
Hey, WOW, no alarms. You lucky dog. I do have cycler envy! I want to thank you for posting this most excellent synopsis of your first night on the cycler. I wussed out when I started and did the first three days on the cycler during the day while I was awake and could attend to "Amy's" needs. And it was one alarm after the other. But then at least I got to sleep those nights (well not soundly, but I did sleep). So yeah, this REALLY takes some getting used to, and to be honest, it will take you a good three to four weeks before you feel comfortable enough with yourself to actually sleep through it all. Anxiety is part of the process, but writing on here will help with that. It did for me. I could get it out by writing what I was experiencing. You can do the same here, just update with a new post every day. Then before you know it, you're an ole pro!
I do want to comment on the initial pain drain. I too still have some initial pain drain. I normally wait until that drain starts to take my nightly meds and brush my teeth, so I have something to do to distract me while it's doing the initial drain. You can come up with your own method of how to deal with it I'm sure, and over time it will get less and less, but not sure if it will ever completely go away. Hasn't for me after a month and a half. I wouldn't worry about it, just come up with distractions to help you deal with it. Since I don't leave anything in, my machine has the option at the end to do an "extended drain" to make sure all the fluid is removed from my peritoneal cavity. But since you are leaving fluid in, you won't need that option.
I think it's great you can "mobilize" yourself to go into your husband's office. That's great. My Amy is not movable at this point the way I have it set up. I may change that one day, but so far, the tube reaches the bathroom and I found out if I REALLY stretch it, I can make it far enough into the kitchen to get something out of the fridge since the fridge is right on the other side of my bedroom door. So I can get a drink at night if I want now, which is a good thing.
The set up on your machine is similar, but sounds a lot simpler than the Amia. And it sounds like you mastered it very quickly. So kudos on that! Yeah, it does seem like you're wasting fluid, but at 6000 for 6 hours, you would need to use two bags cause it's going to use some from the first bag for priming an all that. Did the heater warm it up good enough? How does it heat the second bag? Do you physically have to move the first bag off the heater and put the second bag on the heater in the middle of the night? Just curious how that part works. Do you know what the size of the small bags are? That would be good to have so they don't weigh as much. Horsie needs to know about that option, depending on her prescription.
Again I'm very impressed with your progress with this. You got it down. Now just be very careful with the whole "connection/disconnection" process and not contaminate yourself. That's the biggest enemy to deal with in all this---germs. Stay vigilant during those times and you should do well with this.
Update this as new things come up over the next few days, comparing the next days to this first day.
the second bags does warm up too I forget how she explain it to mri don’t I will have to check tonight to make sure it warm I just trusted my nurse i think I have it in my head but don’t know how to word it. We use some smaller bag when I train tgst first day at the clinic on machince . Yeah these bags are a lot heavier than a manual bag . She did tell me I can just put my heating pad away or use it in my back so test the second bag get warm .
Yeah, let us know about that second bag, how does it get warmed if not sitting on the "warmer". With mine, there's a whole separate little 2000ml "heater bag" that comes with the cassette that I put on the machine heater. I hook the two 6000ml solution bags to the cassette through two separate tubes, just like you do, then the machine pulls it from the solution bags, one at a time, into the "heater bag" where 2000ml is heated at a time 30 minutes before it does a "fill". So it heats the first 2000ml, fills that, the heats the second 2000ml so it's ready before the second "fill". And repeats for the third and fourth 2000 for a total of 8000ml for the night. So I waste 4000ml each morning when I empty everything to throw the bags away. But later if they add another exchange, that would mean I would use a total of 10,000ml. So I have room for expanded treatment if needed.
I did get a little sleep last night I got three alarms at the beginning of initial drain I kept looking at tubing no kinks duh I forgot to open transfer set I did that of course drain pain in first drain the rest of night went smooth no alarms at all.
And transplant center call me today they had the meeting about me yesterday she said all went good I am reinstated 🤩😘so I’m back on the list thanks goodness .
I couldn’t figure how to put the video on here of the sound of the claria . I made one mistake while I was tired forgot to break the frangible on second bag so it went through priming and then I got the beeping alarm I couldn’t figure out my daughter law came down they just live four houses down and she read my step by step and we figure out I forgot to break the second bag frangible so I broke it started priming again . I’m having drain pain initial drain and last drain it woke me up last night I try to turn all different way it didn’t help I actually rock myself on my bed that help some .
I had to do a 24 hour urine today and of course it seem I not peeing as much as I usually do so don’t know what they check that for I don’t think it will be accurate cause I usually go a lot more than I have today, tonight I have to use the drain bag so they can check that to I forget the name of the test k something y’all know . When they test that do you find out information right away or does it take any time . I will see if my prescription change any . When I find out I will post .
It's an adequacy or kt/v test. When I did mine I had to wait a couple of days. Are you using a regular size drain bag for that? I heard the ones with the machines are heavy. Last time I had to label all of my drain bags with the time and bring them in. There were only two then so no big deal but with three they'll be heavy if I have to do that.
Did they put you on tidal? I've heard that helps with the pain. Really sucks you have to go through that.
yep it a really big bag my daughter in law is taking me so she will pick it up for me. Yes they have me on tidal I keep 500 ml in me last night it was more pain the initial drain . The last one wasn’t as bad as the night before.
Guess I'll have to have my husband help me then. I finally got rid of the 16 (8 yellow, 8 green) boxes I got as a duplicate order. I'm taking them to the center today along with my appt with the neph. I have some questions for him.
Are you finding your hands dry with all the handwashing and hand sanitizer? f course I'm still on manuals so I have to do the extreme handwashing 6 times a day. I'm working on finding a non greasy lotion that I can put on during dwells. I can't wait to get on the Claria.
Hey, be kind to yourself during all this. I've made my share of mistakes. And once, my machine failed on the cassette test and I had to start over again, then another time, one of the solution bags had a bad kink in the "neck" and wouldn't allow the fluid to flow through properly, so had to put on a new bag. So yeah, "stuff" happens, both human and machine. Glad you had assistance going down your "checklist". I still follow mine every day so I don't forget something, though the day will come when I will forget, that's a given.
Hate that you're still having that initial and final drain pain. I do too but i don't think it's to the extent you are having at this point in my journey. Wish there was an easy solution to that. Last night I got alarms and a little drain pain 3 out of 4 drains and had to stand up until the drain finished to hush the alarm. I don't have to do that as often now, but it does happen. So I'm just prepared that this is how it's going to be. But I REALLY hope your pain diminishes like mine did after a couple more weeks.
They had me do a 48 hour urine collection for my last labs, and bring a sample from the drain bag (not the whole bag-though I sloshed it around so everything was mixed well from the 4 drains). I JUST Found out my kt/v yesterday (2 weeks later). It was 1.7, which they said was barely enough. I'm doing 4 exchanges a night over 10 hours currently. They will probably increase my prescription from 2000ml to 2200ml if it doesn't improve by next test. I must be really dirty inside at 2200ml I'll feel like I've got a car wash going on in there. But hey, if that's what it takes to get "clean". Bring it on.
Update us often here so we know how you are doing.
I hope my pain eases she did change the tidal today so we will see if that help. Will let y’all know when thought my my visit would be about 19 minutes but the social worker got hold of me and ask me to fill out these questionnaires a lot was how is kidney disease affecting you and question to see if you are depress.
yeah, I had to fill out those questionnaires as well. That was before my hernia surgery, so I told them we need to do those again as at that time I was a pretty miserable puppy. MUCH better now that I've got some of that behind me. I hope you gave them a good picture of what you are going through, which is a LOT right now with all this. Don't sugar coat it. Telling the up and up about it all without either being over dramatic or trying to hide some of the issues is the best way to go. It let's em know where you are and how best they can support you. Hopefully your social worker actually listened to what you are saying and will pass it along to your care team so they pay attention to it. Be your own best advocate with the whole team. Tell em when you're not happy, and tell em what things are working. I told my dietician I was ecstatic that I could now eat a banana occasionally since my potassium level dropped since I started dialysis. And I told my nurse and Neph how great it is to see my blood pressure drop below 120 since I started dialysis. Hadn't seen it that low in a long time. So lots of positives happening along with the drain pain and alarms! I hope you have some positives coming your way as well.
Did either one of you sign up for or are you on Medicare Part A?
My social worker and I have been discussing whether I should or should not sign up. I have insurance through work (Aetna) and am covered by my husband's work insurance (UMR) so Part A would be third (unless I lose my job). She thinks I should since it's no cost but I'm only 59 and if it goes for 30 months, I'll only be 62. Right now I want to keep working.
I'm hoping I get a transplant within that time frame where I'd then have to sign up for A and B, and wait on D since my husband would cover other meds besides immunosuppressants.
I got an email yesterday from the Social Security Admin about a tele meeting on April 5. I didn't initiate this so I wonder if it's a scam (social worker didn't think so), or if I should go ahead with it and then work with her to sign up for A.
This is hard for me to answer since I was already on Medicare with supplemental Blue Cross Blue Shield when I started dialysis. You should make this a separate post so others can offer info on Medicare before 65. And the social worker at the dialysis center is "supposed" to be the expert on all things insurance, but who knows. I would just guess that keeping your regular insurances for now might be best, then sign up for A and B at transplant time, though the "call" often comes fast, so you will have to ask if you can sign up for A & B AFTER your transplant. Not sure how you would time it so you sign up just a week before since you don't normally get that much lead time unless you have a living donor. As for an email from social security. ONLY if you've signed up to receive "notifications" from them would I trust an email. I'd call them to find out for sure if it's real or not by calling the number YOU look up, not one the email provided.
well they haven’t call me in to see tell me what the kt/v results are but I seen it in my davita my chart look like I fail it if they want 1.7 my was 1.63 so what does that mean I know I was hardly eating until like three days before the rest I had no appetite don’t know if that affect it. I go back Wednesday for clinic visit so I know the doctor and nurse will go over it then. Does that mean I need to do dialysis longer? Right now I’m doing 6000 at night for six hours using two 2.5 bags .
I failed mine with 1.69 and what they did was increase the number of exchanges (2 to 3) and the time I dwell (1.5 hours to 2.5 hours). Some of the people on the FB page I told you about say hydration plays a big part in the results. My clinic calls it an "adequacy" test which is supposed to help determine how well your current exchanges are clearing toxins so the hydration bit seems reasonable.
I'm not sure about the eating effect. I know I don't always get my 2000 calories a day cause I have a hard time eating while dwelling and it seems like my whole day is taken up with exchanges (filling, dwelling, draining all day).
Then there's all the other things...vacuuming, laundry, M-F work from home stuff, dogs in/out, feeding, grooming, trying to find something that sounds good to eat that is "renal friendly"....it all just seems endless.
I have to do another kt/v on Apr 5 and do a PET on Mar 27 so we'll see if they adjust stuff but I'm still not on the cycler at least not until the end of the month.
I'm not with Davita or Frenesius so I'm not sure if there's an online portal or anything like what I have with MyChart. I got my blood test results on a sheet of paper and it drives me crazy having to ask to a copy. I do know Baxter has something and I want access to that. They placed my first order and it was messed up (I got double of everything) and have placed the order for the cycler and it's supplies but I have no idea of that that consists of. Ah well day in the life of dialysis. I'm sure you have all sorts of chores and the like.
the nurse call me this morning thought it was unusual for last time I measure my urine it was like 1900 this time didn’t even hit 800 . I do notice my stream is not as full but it like half I did before in the 24 hours . She said if I ate anything salty that found affect my flow my sister in law made up done dishes I ate and she is truly a southern cook they cook with lots of salt . So I’m going to watch that I don’t eat to salty stuff I got to do another 24 on sunday .she increasing an hour so we will see. I’m afraid when I placed my guest order Baxter may mess it up. My pd nurse said to tell them what you have left and they can figure it out. She said if they make a mistake they pay for it but if I do I pay for it.
When do you place your next Baxter order? Did you get it all figured out? They want me to place my order around the 6th of each month for shipment to arrive around the 20th.
Sure hope most of your drain pain goes away soon. Did you ever talk with your surgeon and like have them take an x-ray or something to see if it's positioned correctly and all that? Just curious as to what they're doing about your pain issue at this point if it's not a lot less than it was in the beginning. Don't think I could take it if it was that bad all the time.
Friday night drain pain was unbearable Saturday night hardly no pain last night pain again I have had to use the bypass on the machine don’t know if you have it on Amia probably but when it get to that point I can’t take I hit the stop button then the arrow until bypass enter then it will stop that drain and go to last fill . No one talk about X-rays yet it you are still new to this give it time .
I have to order my supplies this week I’m so afraid of messing up . My pd nurse said to call them and tell them what you have . I just realized I don’t have enough cassettes until next delivery which will be April 10 I am short like three cassette I never thought I had to count what was in that big box it was so full lesson learn I will see if my center will give me three or I will have to do manual for three days . When you order do you just order for your machince or do you get some manuals ? Any tips you have on ordering anything easy to forget that I should order?
Oh wow, sorry to hear that friday night ask last night was bad. I would be talking to the Surgeon if the dialysis center won't listen to you. Did you ever have a follow up with the Surgeon after your catheter was put in place? Ask the surgeon if he would do x-ray or something to check it out for placement issues. I mean, he's the one who put it there!
As for supplies. It's ALL important. Your nurse should have everything in your Baxter order list, but YOU need to double check that everything is there from PD solution to 4x4 gauze, to AlCavis, to ExCept, to anti-bacterial hand soap, masks, etc. Make a list of EVERYTHING you use and where you need to get it from, and make sure you can order it through Baxter or get it from your PD nurse. Oh don't forget Mini Caps. Very important. I still have some boxes of manual fluid left over from when I failed manuals, so yeah, it's good to have a box of yellow, box of green and box of red sitting around, along with any supplies you need for that. So if you are completely out, sure, order at least a box of yellow and box of green.
yes surgeon won’t at least two months of doing machine before I contact him , he is supposedly best surgeon around my area for putting in the pd catheter he is very caring too but from him doing so many of these he said please give it two months before we think of another surgery . Tell you what if it doesn’t count against me or hurt anything I’m going to be using the bypass more my last clinic visit they told me to use it if the pain that bad they don’t want me having to go through that.
Ok thanks for the tips on ordering I have a lot of manual so I’m may not need to order those .
Ok, good to know you have a connection with the Surgeon once the time comes so you can get his opinion and/or get him to look into it. Really glad they will let you use the bypass when needed. NOONE should be going though torture with all this. That's what I was feeling with manuals when i called it and just stopped. So do what you gotta do. Wish I had more ideas for you, but other than doing what you're doing, there's not much you can do. I really hope yours does like mine and stops on it's on for the most part after another week or two. Time will tell. Till then, bypass the crap out of it!
Hey, this must be common. I failed twice. 1.6 then 1.7. So next month they'll probably up me from 4 exchanges at 2000 to 4 exchanges at 2200. I've not had a PET yet that I know of.
That was my assumption as well. I thought they would make me do a mix of 1.5 and 2.5 or something, but nope, the doc (Neph) said at the monthly meeting they would up it to 2200 x4 exchanges. Very odd.
I would think they would just move you to a 2.5% instead of increasing the Volume , especially with your hernia repair...extra fluid puts so much more stress on your abdominal
Increasing the solution % only pulls out more water (i.e. more UF), it doesn't pull out more toxins. They have to either add more exchange or increase the volume to meet the adequacy.
it comes in a big black soft case my center told me if I need one to travel I can borrow one from my center. She said she could give me a link if I wanted to order one on wheels .
yeah I hope mine can provide a link or something. I want to visit my mom in MS and daughter in ID this year and both are 2 day drive so I prefer to fly. Otherwise it eats up PTO days.
Just wanted to jump in and say that I dumped the cycler about 8 months ago and couldn't be happier. I just wish I've done it earlier. I'm happily on CAPD, I do an exchange in under 20 min (I drain really fast). No more sleepless nights, being tied up and taking 2 hours to setup and disconnect the machine..
I'm looking forward to getting a cycler. Right now I do 3 exchanges, fill (gathering supplies, washing hands, opening bag, etc) then actually filling takes about 40 min. Then I dwell for 2 and 1/2 hours. Draining (again the the collecting supplies, etc ) takes another 40 min. I try and eat in between cause when I'm dwelling it feels like I have no room.
When I'm dwelling I try and do my work from home but all the exchange interruptions makes it hard to remain focused. I so want to go back to the office. I'm pretty isolated out here and I'm missing out on a lot of what they do.
I do 4 exchanges - a long night exchange and then 3 daytime exchanges. I get up at 6am, do an exchange and then take the kids to school. I also work from home - I have a standing desk and the CAPD pole is next to my desk. I work on the computer while doing my exchanges. I do a full exchange in 20 minutes (maybe it's just my physiology) so it doesn't interrupt my day too much.
I do my first PET on Mar 27 and start cycler training then too.
I live in a one bedroom small house with dogs and cats so I was told to do the fill/drain in the bedroom with door shut. My desk is in the garage/storage area (fully climate controlled)
glad manual working for you. It doesn’t take me 2 hours to set up machine it only take about 20 minutes if that.when I did manual I was draining in about six minutes really fast . I did it three times a day they wanted it to dwell in me for about 4 to six hours my problem with manual I had no appetite my stomach always was full of fluid . If I can get rid of the drain pain the machine not so bad for six hours a night for me.
I wasn't getting much sleep on the machine, I would wake up with each exchange (I'm a light sleeper I guess), it would never drain properly unless I stood and danced.
I just dance the end of the drain cause that when pain hit☹️yeah we could be dancing for something fun not dialysis lol . I’m a light sleeper too if this drain pain don’t end I may be following suit going to manual but I promise pd nurse and doctor I will give it more time. But I rather be a dancing Queen somewhere else🤪
Have you tried closing your transit set a bit when it hurts...it will slow it down so it doesnt suck so hard...they may need to re-program your cycles for longer drain times...mine are 10 minutes
Yep...sounds like your Cycler is draining too fast for you...PD should not be painful.. she can adjust that in your program..might add another 10 minutes or so to your overall time ...but well worth it
so you you say close transfer set a bit you are not saying all the way . Do you think if it open all the way that makes draining faster this is all new so I’m learning it great to hear from other that can help from what they have been through .
Yes....closing your transit set a bit...not all the way...just until it slows down enough to not suck so hard will definetly help the drain pain.. and then turn it back up to go to next Cycle...but ask your PD Nurse to extend your drain times in your program so that you get all of your Dwell time...it really should be set up in your program...You are using Claria Cycler...I use an Amia Cycler but it should be the same...but your PD Nurse has to do it as we are not allowed access to that
I would get alarms because of slow drain. I think after a while my brain already anticipated the alarm and would automatically wake me up every 2 hours.
you can sleep in you don’t even have to close your transfer set unless you want to I wake up from drain pain then it goes to last fill so I’m awake usually so sometimes I will close it someday I have slept through it. The machince will say therapy has ended . I clean the transfer set clamp the bags and close transfer set . Then put in mini cap then unhook. You will have to write down what the machine say you can do it in morning too there three thing .
But then you have to re-open all those bags to drain your machine dont you ?...Just the patient line clamped and transit set closed will stop anything draining into you after your treatment
it just two clamps I drain in the toilet through the night. So the red clamp on the bag on the heater and the blue clamp is on the extra bag I empty them in the toilet when I’m done they don’t use the whole bags so there some in both
I don’t know what you mean to drain the machine on the claria it does initial drain then it goes to fill one of three then it go to dwell one of three then drain one of three then it does two of each then three of each then last fill cause I keep some in me. Then it said end of therapy . Then I push the error to get my drain number uf number and dwell number. Machince said close all clams including my transfer set. Disconnect then revive cassette. Then it said turn off.
Okay...your machine is set up different than mine...and I use a drain bag instead of toilet...I was talking about draining what was left in your bags after treatment...mine will just automatically drain them into my drain bag after treatment
Yes it will...but I like to check my drain bag each day for Fibrin...blood...or cloudiness...I can't really see that if I use the toilet...My PD Nurse said if I see blood or cloudiness that I will have to take it to Clinic for her to look at it...If I find Fibrin then I inject Heparine into my bag the next night
I agree about checking daily…I’m still manual so it’s a little easier. Plus I have one cat who is a butthead so I’d rather not have lines running to the bathroom.
yeah that makes sense with your cat. I have to put heparin in my bags every two days so I’m not worried about the fibrin now this is this for me they think it help some with the drain pain . I will do a drain bag every so often.
Now with the new change last night s the increase it to from 3 to 4 cycles so increase some and the time went from six to seven hours . 😟I did not sleep any last night the third and fourth drain hurt. I try closing the transfer set some like Rhen said it help some but the last drain hurt .
I feel so bad for you having to deal with that. I hope you get the call soon. I’ve only had a little drain pain and I can only imagine how much worse it is for you.
So sorry that closing the transet set isn't reducing your drain pain much...hope they can figure out how to help you...Are you trying to drink the same amount of fluids each day...drinking too much more or too much less might be causing your Cycler to keep adjusting
I was doing that at first too...because I had no fluid restrictions...but I began to notice that when I drank too little or too much my drain pain and leg cramps increased...I also noticed when I ate more salt than I should...more pain and leg cramps...the problem is salt is hard to control because its in everything...if it makes your thirsty probably too much salt.. As Dialysis Patient we have to really pay attention to what we put in our mouth...lol
Each morning I put 3 bottles of water in a special section of my refrigerator...and I only take from that section. then I know how much I have drank that day...I also take my drink with me if we eat out so I can keep on track....seems to work for me
I finally got some sleep last night.Rhen since you mention about water I said well usually at night I’m pretty dry so let me drink some water I did when third and forth drain started. Cause some pain woke me up. But I also laid on my right side with my leg knee draw all the way up. The pain wasn’t as bad so it work for the third so I did it the fourth. Will try same thing tonight
Well it work one night but not last night bad pain last drain again but that was it just the last drain .
it does they still make me do a sheet with no weight if I using 2.5 or 1.5 the sheet has the drain uf I don’t know if they just want both I don’t know if all centers make you keep a chart but my does. You have to enter your weight and bp on the machince so it easy fir me to write down so I can enter it
I'll probably do the same as I like to have a record and once it's in the machine does it "disappear?" Next week I start the cycler training, I'm so anxious for it to start so I can get out of the house. I have so many questions.
Do you have yours set up on a cart? I bought one with wheels that I can move into the bathroom to drain (damn cats so I can't run a line to the toilet.)
How many boxes did you get with that first delivery? I want to keep 2 boxes of yellow and 2 boxes of green just in case I need to do manuals but my space is limited,
Do you place your own orders? Do you go through a portal for Baxter?
I'm sure BeachGirl will answer when she has a moment. I'm to the point now where I can order my own supplies. I try to keep an unopened bottle of Antibacterial soap, an unopened bottle of ExCept, and unopened bottle of AlCavis, an extra month's supply of mini-caps, a half month of cassettes, and a weeks extra supply of PD fluid on hand. Once you have the initial order that the center places for you, they will then put your "prescription" in the Baxter portal so that you can use your phone to place your order with "Baxter Mobile". They even send you a text saying you have "6" days to place your order, then "3" days, etc so you don't forget. They're really good at helping if you need help. But they really want you to get your order in during that order period, otherwise it's considered a "special" order and the center get's charged a lot for those, so they don't like that. So the good news is that you can place your own order and it's easy to do. I just got my shipment today for April. So I'm good to go! I still had 10 boxes left from the last shipment which would carry me till the end of this month.
the pd nurse order my first shipment she didn’t have them send me enough green cause my b/p was going so low she thought I would more yellow so my center is ordering more green o so they will take the charge cause they won’t be here before next order . My pd nurse told me to call them and tell then how many boxes of each I have left and Baxter will figure it out.
Well here my screw up for Monday they wanted me to do another kt/v test so I empty most of my drain bag cause it was heavy well she wanted at least 6 inches left I did had 4 left . She said bring it in we will see if it works. Well I had my bag and the 24 urine bottle in a big bag . She took it and said something leaking somehow the urine leak my 8 oz went to 2 oz it spill all in the heavy vinyl bag I had well that in the trash . She said we will try well one good thing my drain bag she said is one of the clearest she has seen so that good and I had an iron infusion but I have a feeling I will fail the kt/v test again .yes my is on a cart. I use two bags a night for my prescription it depend what they do for for prescription how many boxes you should have.
Hey, how you doing today? still having horrible initial and final drain pain? I REALLY hope it diminishes for you soon. I know I keep telling you it will, so I hope I'm not lying to you. How's your husband doing. Are you struggling with all this and taking care of him as well? My dad's doc got Hospice to come to my house now to help a bit with my dad. They have a nurse, a social worker, a minister, an aid who will help him with a bath when necessary and a volunteer who will visit with him, so lots of people coming to the house each week, but so far no one has offered to do any of the cooking, clean the toilet after he messes it up or wash his clothes and linens and make his bed and keep his room tidy, so not sure if the doc has helped me any with all this, other than I don't have to drive him to the doc office, the nurse checks him when she comes each week, so I guess that's a small help. I'm looking at signing him up for the medicaid waiver program. They say they might provide more practical help. We'll see once I get the info packet from them. So let me know how you and your husband are doing when you get a chance.
I’m so glad you are getting help with your dad that should help you some . I’m building a front porch and a ramp to the front of our house I m having a contractor do it. He will start next week that will help my husband to go outside and sit on the porch I always worried about him going down our front steps they are only four but he has fell to many times. His feet are still so swollen it hard to walk they have him going to a kidney specialist and heart specialist in April . I pray that helps. One of my pastors came over yesterday he ask what the church can do for us I couldn’t think anything yesterday but pray for health but today after I tried to weed whack by my mailbox it gave me out so I sent him an email asking if the youth in my church can come help do my yard so we will see. I usually love being outside doing it and it super hard for me to ask for help but I am aware I can’t do it all myself .
Yes bad drain pain still doctor said I may be more constipated than I think even if I go every day so today he wrote a prescription for lactulose solution we will see if that help. I did write in other post I past my accuracy test with a 2.2 this time .
Ron great you have all the help now with your dad, maybe you can relax a bit and focus on you too. Perhaps have a house cleaner come? I'd love one but out here it's impossible to find anyone and then there's the dogs. Maybe when they are gone.
Beach it's great you passed the kt/v! I do mine on the 4th so here's hoping. Did you drink more water before this time?
Well the first night went well. A lot of "did I shut off air", making sure I was hands, looking for best set up. I did get a 5 gallon bucket to drain into and holy cow it was almost full.
So there are 3 "exchanges" still, dwell is only one hour 45 minutes. No drain pain until the very end but it was minimal. Tubing is long enough if I slide the cart a little closer to reach the bathroom. The empty solution box over the bag worked very well. It took me about an hour to do the entire set up but disconnect was a breeze. I noticed on the flowsheet there's no mention of hand washing before disconnect but I did it any way.
OMG the amount of trash that goes with just one treatment. Initially she told me to alternate yellow on night and then green the next so I'll give that a try. I guess the goal is pass the kt/v, have good labs, no infections and hang in there until transplant.
yeah the trash is overwhelming I had a small trash can in my bathroom and said just isn’t going to work so I bought a big stainless steel can for bathroom . Yes one thing it didn’t say on my cheat sheet is wiping down the transport set with Alcavis but my nurse told me to have out one gauge for night and one for morning so I always wipe it down before I disconnect just like we did on manual . I’m glad your box work and you had minimal drain pad . I’m on day three of tartar bowl drain pain iso I’m praying that continues.
I did make sure I was more hydrated before my kt/v test but I think them adding on more time I went from six to seven hours so I used more solution still two bags but I never use the full amount of second bag . But I was probably getting the right diaylise is what help. I have to do another one either the 11 or z26 of April I forget which one they want everyone in the clinic to do it in April so they can all get back on track .
I'm still using the Baxter boxes for the trash as it's easier to get to the dumpster we have here for trash pickup. My cheat sheet has one line..."clean the transfer set as taught".
So pretty much I did the extreme handwashing before starting anything, lots of hand sanitizer, she said if I don't leave the room during priming-5 to 7 minutes then no further hand washing. I did all the other steps-door closed, animals out, heat off, fan off, check the bag. I did do the extreme hand washing before disconnecting as I had gotten out of bed to pee. I can see where going between the cheat sheet and the machine it might be easy to miss a step.
I started the machine at 10 pm and finished around 430 am and since my alarm doesn't go off until 6 I just went back to sleep. Easy peasy. Now I have to start eating again since I'm no longer "full" during the day.
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Hopefully the Claria is a lot quieter. The normal sound the Amia makes when it's filling, draining, or just doing whatever it does to need the "engine" running, sounds like your normal office printer, so I've learned to sleep through that sound for the most part. It helps to have a fan going to help create "white" or "brown" noise to drown out Amy's engine noises. But nothing will drown out those alarms. Oh my gosh. Nag nag nag, until I get up and attend. 
