Training day 1 pd dialysis another pd nurse is doing my training I just met her today. She will be moving to Hawaii when she done training me so they will only have one nurse until they get another. Since I have not been as lucky as other to take a shower yet only sponge baths I beg can I take a shower . She said if I show her I can do the dressing all by myself . So she set all the stuff up for me to watch . She had me to take off my old dressing . I watch her do each step cleaning the exit site she said she will have me practice today. She filled me with 2400 of solution this time I felt pressure so she had me lie back . Then when I was finished filling . We learn some other stuff . She said ok let me see you change the dressing . I first wipe down the table with the bleach solution she said I can use Clorox wipes if they have bleach but check some don’t I can also you the spray bottle of Clorox bleach if I don’t won’t to make the solution .Then sanitize hands then gather all my supplies exsept 3 ,4 by 4 gauze , Iv gauze, dressing, tape , hand sanitizer, mask , lap pad gentamicin cream mask& put on lap pad I was practicing on a dummy called Mr. Hanes cause he had on boxer Hanes is how they name him. I wash hand one minute gave me the chart at the beginning of proper hand washing .1 minute she said I could use my Apple Watch for timer. Open sterile supplies I put except on 2 pads of gauze put the gent cream on iv2x2 she said just a little bit I used to much she said the insurance only pay for one tube of that a month. .I took Mr. Hanes old dressing off then sanitize my hands she told me to pick up the corners of the first gauze to make a wonton shape that was very hard for me my brain didn’t want to process she wanted me to squeeze out excess flip gauze to expose untouched portion of the gauze .starting at the exit site cleanse in a circular motion moving outward not to wipe same area twice then repeat cleaning with second gauze then take dry gauze Pat dry circular motion. Repeat if needed. She did have me look at exit site and she said my still is a little red from surgery but it want to make sure it not red and my still has a Stab on it. And she had me press around make sure it didn’t hurt. I apply the Iv gauze to exit site making sure the gent cream goes against skin . Then apply the second Iv gauze the opposite way . Then apply the island dressing 2by 2 and pieces of tape .I bought a pd belt so I ask if I can use that instead of all the tape so we put it on it had loops and a pouch so we put it through one loop and then the pouch. So she said you can take a shower now yeah. We talk some more I ask about the Amia machine she said my insurance wouldn’t approved that one I don’t understand why they wouldn’t . She said I will be getting the Claria machine it the sister machine to the Amia this upset me she said you can do all the stuff on your smart phone so you won’t have any problems. Ok it time to drain me I’m like oh crap. I knew pain was coming . So she set all that up and she said it would be like 15 to 20 minutes to drain . She had to go out of the room to check something. She left the call bell there told me to pull it if I need her back in . She told me to pinch the tube on the drain bag if I started having pain try to move around well 11 minutes in I was starting to have the pain so I got out of the recliner and move oh crap it hurt pinch the tube ok I let go a minute or two I’m having more pain she said 0 to 10 I said it a 15 I pinch again she said it hurting cause you are towards the end. So she has me sit down a bit still pinching ok let go and I could hear it draining ok pain down to an 8. She like you still have a little more I had to pinch a few more times she had me lay on one side than the other side each time I pinch and move some when I let the pinch out I heard the drain . Ok lay on my back now finally it was done thank goodness . She said you will get use to it. Tomorrow bring a tynenol with me she said . Tomorrow will be watching some videos she said . We would have done that today but we ran out of time . So when I came home my niece took me I seen flowers on my table and my back door to the garage open . I said oh Crap he is not meaning my husband went down the steps in the garage he uses a Walker he not allowed in the garage he was on his stomach in the garage he fell he was looking for a vase to put the flowers in he wanted to surprise me . I told him the better present for valentines would be him doing like he is supposed to.not go in garage not go out by himself he drove to Sam’s club got flowers he had to walk in with his cane not his Walker to get scooter to ride I was like what were you thinking he said I wanted to surprised you , you do everything for me I wanted to do this for you . I swear he has an angel watching over his shoulder he didn’t get hurt that was a blessing . I did take my shower and I did my step by step dressing change and I finally feel like a human .🤪😍
My first day of training on pd dialysis - Kidney Dialysis
My first day of training on pd dialysis
oh my ordinal pd nurse came in and I ask her about the Amia she said she still trying to work on it but they did tell her no for the insurance but she said she has a call in to see what the policy relating to insursance is but she said there is a shortage right now of dialysis machines she is trying to get a new one for a guy who has a really old machine and they told her there none for him right now she said she knew there was shortage in stuff but didn’t think it would hit Baxter so that may also be why I’m not getting the Amia but she is trying the best she can .
Wow, what an ordeal. Still, I'm glad you did well and had your shower. Sounds as if you got the process down pat and will be good going forward. Bless your husband for getting the flowers. Enjoy them.
Bravo !....Enjoy your Shower and your Sweet Valentine...
yay for showers!
My first day training was also yesterday and pretty much mirrored yours...different nurse. I filled out a lot of paperwork. No island dressing but I could take a shower EXCEPT they did a TB test and I can't get that area wet.
Disruptive is the word I'd use to describe dialysis. I had a schedule from Fri and there are already 2 changes to it. I had put it into my Outlook calendar at work and my boss approved it all, then yesterday I had to make changes already. I feel like a retail worker. I'm there from 9-2 today so not sure what to expect.
your is longer then mine I’m there 9 to 12:30. Second day today was doing another fill and drain of corse it hurt me like heck at the end this nurse like to get every bit out the other nurse told me since it only a little you will pee it out since you are still peeing. I had to tell her today ok I can’t do anymore cause moving all round did not help today every time I let the pinch tube go the pain came back in a 10 finally she said ok I’m not doing anymore on you the little won’t hurt you .She was worried about my blood pressure and even call my doctor cause my standing bp was 80 over 50 my sitting was 135/80 she didn’t like it dropping that much it did it yesterday to so the doctor told her for me to cut out one pill I told her oh don’t worry when I drain it will be up . At the end she took it it was 158/85 she said are your stress or something I look at her she said oh yeah you had all that pain that why it up. I watch the videos today that I was suppose to watch yesterday .
Oh Horsie I bet it disrupted when you are working you are planning around it then they change it. Right now my is 9 to 12:30 this week mon and Tuesday and off Wednesday but see doc on Wednesday then training Thursday and Friday 9-12:30 but on Thursday they are letting me come late and next week I will have same schedule.
Is your every day or do you get a break?
On Thursday she may have me practice on doing the fill and drain myself I don’t know on me or on a practice bags
what a nightmare you have. Mine is nothing but really uncomfortable when filled. Today was watching some videos, going through a workbook. I did do most of the steps to fill and drain but discovered I have no strength in my hands, kind of embarrassing when I couldn’t even open the solution bag.
Tomorrow back to regular nurse from 330-6 then Thursday is 1-5. Off on Fri.
I did meet the social worker today and discussed my situation with insurance and getting Medicare. I have my Aetna through work and I’m also covered by my husband’s work insurance, so I have 2 private insurance with no premiums on either. So waiting for transplant and then signing up may be best…. As long as I’m working.
We’ve been using greens to take off my swelling and it’s working well so may switch to yellow. I will be having miracept (sp) shot for my anemia either tomorrow or Thursday.
You're a warrior, Beachgirl32! Enjoy the flowers your sweet hubby got you. And all those showers you can now take. Keep on, keeping on!
wish you all the best In your dialysis journey 
my husband picked up antibiotic cream so I could take a shower tomorrow morning but to be honest I’m kind of scared to in case I miss a step and get an infection.
I think I’ll wait til Fri when I’m off work and cay take my time making sure I follow all the steps. Ami weird?
Nope. You do You.
got a shower this morning and oh my it was as glorious. I think training is going well I’m pretty much doing the exchanges by following the steps. Should be good to be on my own after next week.
Are you having any fill issues? When we put the whole 2 l bag in I’m very uncomfortable borderline painful. So we tried 1800 and it was so much better.
Trying to work out how that will work once. I’m on my own and back in the office.
Hey, I just found this thread. Sure wish I would get an email every time someone I "follow" posts something. REALLY happy you were able to get a shower this morning. You have rejoined humanity Also glad that they reduced you down to 1800. I think that will be your "normal" amount until they say it's not working because you need more dialyzing. Hopefully that will not happen. So you didn't get cramps from the 2.5? If not, that's a good thing.
I did my first exchange on me today I was so nervous . My mind read the cheat sheet but it sometimes my mind want to go next step that I miss one step so with my cognitive problems we are working on that my son came with me today he had a solution since I have an I phone he set up a reminder app I can put a check by each one I did I will see if I can put screen shot on.
yours is different than mine but the process is the same. There’s no “practice “ dummy at mine so I’ve been doing exchanges on me since the 2nd day
The nurse is there watching over but I believe that by my home visit I can do it by myself. I do have some issues with hand strength so I’ve been using a squeeze ball.
Still no word on getting a cycler, I’m considering working from home as long as I have to do manuals.
Hope your husband is doing better. That fall had to be scary.
no cramps but oh my filling. For some reason I get extremely cold…shivering and all even when she put 2 heating pads in the cooler holding the solution bags.
I don’t always get email but if I go I “My feed” I can see all the posts and the most recent reply.
So they showed me the log sheet and how to fill it out. Since I’m off Fri, Sat, and Sun I thought I’d practice doing the same things with the exception of the exchanges. In order to figure out how much time adding these to morning prep for work I want to time it all. I haven’t been sleeping all that well so I don’t want to get up any earlier.
I didn’t count today as the shower was a bit long. I did get one of those lanyard things and that seemed to work okay. I also have one of those belts…I like it as I use less tape which even the paper tape bothers me some.
I kind of hope my potassium stays low at least to summer time produce season…fresh tomatoes…cantaloupe….broccoli..Brussels sprouts.
I'm just rereading some of this. So even the paper tape bothers you. Dang. You are sensitive. Glad you can use bot the lanyard and the belt. The belt was ok, but for me, I would get it all messed up at night. (Not use to sleeping in anything resembling a bra! Ha!) So back to taping I went. Hey, they supply the tape, so I use it and it only causes a small amount of itching.
Oh boy, wouldn't that be nice if you could eat fresh tomatoes, cantaloupe etc. That would be awesome. Eat some for me and tell me how good it is. Actually I remember one guy on this site, when folks were going teetotaler on not eating tomatoes and all, he said "For goodness sake, live a little and eat a slice of tomato!". I've taken his advice and sneak in a slice once a month or something. It is SO good. I've not had the courage to sneak in cantaloupe, but I might this year now that I'm on dialysis and see what happens. Good thing is that watermelon isn't too bad, so I ate a good bit of that last summer. I need to ask my dietitian about it after my next labs.
Ok, I'm JUST Finding this thread. i wish I would get an email when someone I "follow" posts something new. I did not. So I'm just reading your "experience" with PD. Thanks a ton for posting all these details, it shows how different centers do things slightly differently. I can pick out a few differences in how my pd nurse taught me. And yeah, i starts with one nurse, then switched to a different one for training when the first one took a different job. Seems fairly common in the industry.
I'll be very interested in which machine you actually end up with. I'll do some research on the Claria and see what the differences are from the Amia. I really hope, after your experience with drain pain doing manuals, that you do not experience much drain pain with the cycler. And I really hope, whichever machine you get, does not have the alarms that are going off like with my Amia (3 out of 4 drains causes an alarm I have to stand up for).
I applaud your husbands desire to show you his caring thoughts, but yeah, he needs to find a safer method for communicating those thoughts! Flowers are nice, and normally don't come with a lot of risk, but in his case, they could cause HIM to need flowers!
Really glad you're getting the dressing changes down working on Mr Hanes (too funny). Maybe you should give Mr. Hanes some flowers :-). I would like to trade notes a little later on about your procedure compared to what they taught me. Like they have me put 2x2's into the Except bottle cap and squirt Except onto them there, using the bottle top as a "container". Little stuff like that. It'll be fun to compare notes.
Also very happy you were able to take your shower. It does make you feel a LOT better! I ran out of hot water almost my first one since I stayed in there so long!
yeah I told my husband I want him to live longer. The doctor goal is to get him off the rollator Walker in a year he definitely has rheumatology arthritis really bad she put him on Ra med yesterday we will see if they’re an approvement . Today the first time had pain during the full it wasn’t as bad as the drain pain yeah that this my doctor saying 10 percent of his patients have drain pain but let say if each of his doctors in his office there are three so there 30 percent if they each have 10 percent . Yeah I just pour the except on but it 4x 4 so I guess each center teaches us differnt . Did any of you have to wear an apron that had a transfer set hanging on it that you had to practice on before you were allowed to do it yourself ?
Yeah, they put a sterile cloth on my lap during the incenter training. They said that I could use one of those pads folks use for pets at home, though I just defaulted to a few sheets of paper towel draped over my lap for the transfer set to sit on after connection while it filled or drained. The nurse approved it since I was basically using paper towel to dry my hands after the extreme wash before connecting so if they were "clean" enough for that, the would be clean enough for a lap mat. And yeah, 10% x 3 is 30% is anybody's math book, so there's a bunch of us out there with drain pain! Enough that they should mention it anyway. Again, i wish this site had a "tips for PD newbies" page where stuff like that would stay forever and not get lost way down in the feed, which this post will eventually do. And yeah, each center, even each nurse will do things a tad different from one to the next.
I hope the new med helps your husband! We're rooting for him too!
Keep us posted on how this week is going.
training today she had me practice again on the apron since i wasn’t there over the weekend . Then I did it on myself . I’m getting the hang of it still had drain pain today just two sharp pain . My niece was with me the nurse I had my niece practice too incase I’m sick and need help she will know how to do it. I had to watch some more video take a test I got 17 out of 17 yeah . But I had to reread the questions a few time. The nurse said because of my cognitive problems we will still do some training next week . She did order my supply it going to be like two months cause she did for manual and machine .,Tomorrow I will do it all myself at training .
Hey, just catching up again. How are you doing "on your own". Getting the hang of it. So am I reading you won't be going solo at home for another few days, so no dialysis this weekend?
I have did everything myself the last two times at training . No this weekend I’m not doing it at home yet . I will have three days off cause my nurse isn’t there on Monday . I have to come in Tuesday morning for refresher and she said she will come to my house Tuesday afternoon and I will start at home. My nurse said she just may make me do manual three time a day . Cause she said I’m peeing a lot still. She sent me home today with scale king size heating pad thermometer scale to weigh bag. The pole and a pd manual notebook . When I came home there was three boxes of mini caps on my porch and a box of the 4 by 4 gauze. Baxter is suppose to come tomorrow they told my husband like 50 boxes. They gave him a timeline of 10 to 1 I’m usually in training until 12 I got out early today cause she said I did so well.
Still having the drain pain it was an 8 instead of 10 so I would be a happy camper if it keep going down .
I haven’t had much pain but I did ask my nurse and she suggested that if I do I partially close the white part of the transfer set to slow the drain. For some reason using a yellow today caused both fill and drain pain so I closed my transfer set halfway and it did help.
glad you found something that help. My nurse said yesterday that we will try leaving a little fluid in not drain it all so my catheter won’t hit my abdomen wall . Cause I even have some pain sometimes not even doing dialysis but it isn’t all the time .
I have that too but thought it was just me. Some days I get up and it does nothing but ache. Once I took tylenol to dull it. I've found that if I'm a little constipated it's worse. I long for the day when I can sleep all night and get up rested and go to work like I used to but I think those days are long past. Still trying to factor in the new normal which doesn't seem normal at all.
How is your husband? Has he recovered from his fall? Stairs scare me cause sometimes I feel unsteady. I hope he feels better. RA sounds tough.
So beach girl has the weekend off and continues training next week. What's your schedule looking like?
sorry you are having some pain . I bring tynenol with me to training and I try to take it so it will kick in before I do the drain .
Thanks for asking about my husband he seem to have a little more energy on the RA drug. He has recover from the fall they put a new doc in the mix, he goes to cardiology the end of April now . He see urology in March that a new doctor to. He has more than one problem so that why different docs .
Glad you can have a few days off since the training can be very anxiety producing and tiring. Once rested, you should be ready to get going on manuals and make some real progress. Yeah, it's going to be like Christmas in February at your house today! Be careful when picking up boxes and all. You don't want to hurt yourself in the process of doing all this! I've got things laid out so I can tell the delivery guy exactly where to put my stuff so I don't have to handle it too much. And I give him a little tip for helping me place it.
So drain pain is still an 8. Yep, been there. I do want to let you know what now that I'm into my cycler about a month, the drain pain is hardly noticeable. I still feel it pinch occasionally, but I try to do something during the final drain, like walk around, take my evening or morning medicine, etc and have the tv on while it's draining so I'm distracted from it as much as possible. But yeah, it should be going down a lot once you're doing manuals. And that's good that you only have to do it 3 times a day.
Boxes came when I was at training I told my husband I wanted manual on one side and machine one on other side and when I came home they were finishing up.
I really hope this drain pain goes. Today it was so bad I usually don’t have it to the end I had it mid bag today . It hurt so bad I was crying today it only hurt this severe only one other time it hurts every time but I usually don’t cry with it she left about 500 in me for over the weekend . You not having it now give me a little hope cause if I have many pain like today I would think this isn’t going to work for me.
I also was not feeling my best today don’t know if that could cause more pain I was having flank pain in my kidneys pretty bad today .
You have PKD also like Ron? I imagine that makes things even harder given there's no room in the inn.
Met with the neph today and got my prescription. 2 exchanges with a 1 and 1/2 dwell. If the 2l causes issues...ha...I can drop it to 1800. He also put me on a vid D pill and a prostatin...that might cause issues as when I took Crestor I had daily excruitiating migraines. I'd rather die of too much cholesterol than go through that again so we'll see.
As for the 2 exchanges...they take about 3 hours so that's 6 hours out of my day and I'm beginning to think short term disability might be the way to go. I used up 34 hours of PTO time and I don't get much each month. Or see if they'll let me do part time but even so I have to take care of the dogs when I get home but maybe when I'm dwelling. Guess we'll see.
Man, I hate that you're still having this kind of pain. And yes, YOU get to decide how this works. I told you that the back pain that manuals caused me made me throw in the towel on manuals. There was no way I could do it with that kind of pain. It wasn't drain pain, but pain is pain! The solution was to skip manuals and go to the cycler, which I would do lying down, which might be a solution to my pain. It was, and still is. So talk to them pretty strongly about this whole pain thing and just tell em what you can and can't do. I mean, I know I'm a wimpy dude and you women can take pain much better than us, but there comes a point for everybody! Now that being said, it could get a LOT better this week, who knows until you get back into it. But just don't be afraid to call it what it is and tell them what you can and can't do and ask them for solutions other than "grin and bear it". I know they have "numbing salve" they use for HD folks until their arms toughen up for HD, so you would think they would've come up with something for drain pain by now. I mean it's not like we're the first ones to ever have this. And yeah, PKD pain on top of drain pain is like double whammy. We're rooting for ya! Don't give up home yet, just explore every option under the sun till you get the right combination.
Oh and forgot to congratulate you on your 17 out of 17 the other day. My PD nurse never gave me actual tests, she would just ask me questions and I would try to remember the answer (it wasn't 17 our of 17 that I got right, that's for sure).
So are you using baxter boxes for footstools like I do? I've got em sitting everywhere And I keep my recycle bin full of empty ones now.
Let us know what your schedule is for this week once you know more. And seriously ask them about moving on to the cycler fairly quick to see if that helps with the drain pain. Once you start on the cycler, the drain pain "shifts" to different area, and you will have to wallow around in bed to find the "sweet spot" where it bothers you the least. Standing is still my least bothersome position, but i can't sleep standing up, so laying on my left side with feet stretched almost all the way out is the second best. That position allows me to sleep through some drains now (after a month). So this is your time in "purgatory" where you do your best to see what you can do to get to the other side where you sleep through all of it. I pray that happens quickly for you once you get on the cycler.
Let us know how you're doing today and what your schedule for the week is looking like.
I’m doing ok today cause I have not had to. Have any dialysis training for three days. I had some pain over weekend but it wasn’t one they bought me to my knee so I know it was because of the catheter hitting my abdomen wall . Yeah all my family is saying it much be really painful when I’m draining if it bought tears to me eyes cause they always say I have a high pain tolerance. I said not with this I don’t .
I go in tomorrow to make sure I haven’t forgot anything. Then either tomorrow or Wednesday I will do it at home . Friday I have meetings with transplant center from 9 to 12 so I will have to do a manual at home before I go. Then I’m to do manual over the weekend . Monday and Tuesday next week train on machine. She had me keep track of my urine this weekend that way she said we can see for sure if I can do three or four times a day manual . She said she knew I went a lot cause I usually go three time during our visit . I have no idea what is a normal amount of cc of urine is normal . So we shall see what I will definitely have to do.
I'm doing the 24 hour urine thing today so I can do my kt/v test on Tues. I did my dialysis on my own over the weekend. Today as part of the test I have to collect my 2 drains and bring them along with all the urine in a jug to the center. I wasn't feeling well this morning and my BP and weight were down so instead of a green bag I went with yellow and will do another yellow this evening.
I get my Baxter order on Mar 6 same day I have monthly labs so we'll see how that goes. My nurse placed the order so not really sure what's coming. Hopefully no problems with it. No word yet on when I'll start cycler training. Otherwise things are going well. I hope the cycler lessens your pain so you can do this.
my nurse gave me the 24 hour urine jug I will still have to do that this weekend I just use the hat.
Did you feel it went well over the weekend doing it by yourself?
I try to put pictures of my shipment on here but I couldn’t put both picture I will try maybe in two different post
This is what I got for manual
that’s a lot of boxes… they even sent 2 reds? I was told I would not need to use reds but I guess it’s just in case. And there are 6 bags per box so that’s a lot of solutions. I’m only doing 2 exchanges a day so that would last awhile.
Are the other boxes the misc supples like mini caps and clips and masks?
I have the hat too just use it to collect urine. Everything went well this weekend, followed all the steps. I’ve been splitting it through doing one exchange in the morning and doing the second one in the evening. Gives my belly a rest from having 2 liters of solution.
yep smaller boxes came to me ups with the mini clips and gauze. The big box that open had lap pads acavis and except two of each and boxes of blue clamps and other gauze and mask . The machince I will get from dialysis center. Glad this weekend went well for you .
So when you do the exchange, do you have the red clamp that you put on the fill line, then move to the drain line when filling after counting to 5 to flush the line of air before opening the transfer set to fill?
There are 2 red clamps used. One’s staying on the drain line after the open and count to 6 then reclamp and then open the transfer set. After the fill the second clamp goes on the fill line.
Yeah, I used two clamps as well at the end, but only one during the line "flush" to get the air out. I guess they wanted me to do that so I would be sure to clamp the drain during the fill process. But sounds like your procedure is the same.
you both use the red clamps I use the blue one it easier for me snd it easier to rid the dialysis bag with the edge of the blue clamp . Yes I got the cassette tapes .
Today wasn’t so bad I only hit like a five drain pain she said let try putting heparin in the dialysis bag usually it done if you have fibrin but she said we will see if it help with the pain.
So she taught me how to do it I practice on a training bag. Then I actually put it in my bag. She sent me home with a bottle of heparin and needles and the box to put them in.
Tomorrow we will do it at my house she will be coming in the afternoon so hope all goes well.
I don’t do Facebook probably a good site to find out a lot of knowledge but I really don’t want to do Facebook but glad it can help hopefully you both want totally just go there so I can still talk to you here horsie and Ron you both have help me a lot as well as some others but you two the most and I just want you to know I greatly appreciate your posts.
don’t worry sweetie I’m not leaving here….I like the people I’ve met. Besides we have the Great Protein low phosphorus…low sodium… low potassium Hunt to record here.
Hey, I've never been a facebook person, just don't have the time I see others spend on it (or prefer not to spend my time that way is the most likely answer---my job is on a computer looking at a screen, so that's the last thing I want to do all evening like a lot of folks do that I see sitting at doctors offices, in restaurants while eating, heck even while driving!--yikes I would kill somebody, mostly likely me!). Some folks are really good at it, they can do it quickly, but I get easily distracted and would spend way to much time reading stuff, I'm sure. Horsie is probably a very skilled facebook person So I'll just stick with this, and Horsie can let us know what else she finds on the facebook page that's pertinent.
So let us know if you are doing exchanges solo at home today. Our thoughts are with you! Blue clamps, never tried em. But might in the future. And you're using them as scissors to open the bags? Ingenious. Why didn't I think of that? I just grab and rip. I found out that pulling gently doesn't work, I have to yank like the devil on the thing to get it to tear all the way down the solution bag container bag while it's sitting on it's end on the table. The cycler cassette bag is much easier to open.
I REALLY hope that drain pain continues to diminish. Never heard of using heparin for it when you don't have fibrin, but like you, I would try anything if mine every starts to come back. Since I don't carry fluid during the day because of my back issues, I have to do an initial "drain" at the beginning of my first exchange with the cycler, before it does the first fill. It doesn't usually get more than a few ml out, but during that time I feel more drain pain than any other time currently. Sometimes the drain will start at night and I'll be lying on my back or the right side and the pain will wake me up enough to cause me to roll over to my better left side and then it goes away. So all in all, it has settled down a LOT since the days of manuals. You've probably toughed it out much better than I would've been able to do. I really hope it goes away once you're on the cycler. Now it took me about three weeks for it to diminish to the point it is now, but that went by fairly quick since i was so focused on doing the procedure just right with the machine and not messing up. I only dropped the end of the patient line and got it contaminated once and had to start all over again, so knock on wood, so far so good.
Keep us posted here or start a new thread about your manuals at home experience part of your journey. This one is getting long in the tooth
When you say you get your "Baxter order" March 6, is that more manual supplies? Or is part of it going to be cycler supplies as well?
Glad to hear you were able to handle exchanges over the weekend yourself. Sounds like you got it down! That's awesome. What's the biggest headache for you about it all. For me it was cleaning that darned pole from top to bottom I could handle everything else, me and that pole didn't get along. I didn't like getting down on my knees to clean the base, so I would pick it up, and hit myself in the head with it, then have to clean where my head hit it again 
Manual stuff I’m sure since I still haven’t trained on cycler.
The worst is my hands hurt from the hand washing and other stuff I can’t think of right now. What lotion do you use? I have to get some.
I use CeraVe lotion. It's a tad pricy, but a bottle lasts for a long time. See if your PD nurse will supply you with something before you buy it:
In my "flowsheet" directions I'm not cleaning my pole but the sheet with the directions and of course the table.
Here's a sort of indelicate question...does the solution upset your digestion? I'm finding I no longer need to use miralax or even the colace as I'm having frequent, very soft BM's. And mornings are rough even though I'm dry overnight that first exchange, while I don't get pains from it, my stomach is upset and I'm finding it hard to eat anything but crackers until around noon.
I've been doing my first exchange at 7 am and then the second one at 6 pm. I try and do them while my husband is home in case of issues. Some days I hate the whole process. And of course the search for the holy grail...high protein, low phosphorus, low sodium, low potassium. Oh and tastes good.
I did my kt/v test stuff three weeks ago and still haven't heard my "score" from my nurse. I guess I'll find out at my next labs. Seems they said we do that once a quarter (every three months). Is that what they're telling you?
not really saying anything about it. Unless I ask questions information is not forthcoming.
It was “here you need to a 24 hour urine and collect your drain bags to bring in. It’s for an adequacy test.”
Luckily the Facebook group clued me in.
Ahh, ok. Oh, they had me do a 48 hr urine collection instead of 24, and a sample from the drain bag (didn't have to take the whole 6 liters of cycler fluid in).
Not much of a facebook person. What facebook group is it? Are folks more active there than on here?
Its the Peritoneal Dialysis Support Group and yes it's more active. Some of the questions asked seem a little redundant and a lot seem to be on the cycler. It's where I learned about kt/v and PET tests. And of course all the ads for protein products.
Ads, oh goody But that's great that you're getting additional info that get's lost on here sometimes. Be sure to tell Beachgirl about it in case she's interested. Did they ever tell you exactly which cycler you will be using so you can look up some info on it? There's probably youtube video's for it like there is for mine that show pretty much the entire process less a couple of details here and there.
it’ll be the Claria. Husband is concerned about the power draw but I can’t find that information…once I get a machine I’ll call Baxter and ask.
Claria, got it. I'll look it up. As for power, you know, I don't have a clue on mine. I assume it's about like an office printer. Yeah, Baxter should know.
I see the Claria is 29lbs. I just weighed mine and it's over 20 lbs, so there is a weight difference for sure, though that won't make any difference except for picking it up to take it with you, and you would probably want to get help with it whether it weighed 20lbs or 29 lbs. I just weighed a box of cycler solution (each box has 2-6000ml bags). Guess what, EACH box weighs 29.2 lbs, about the same as your cycler. So yeah, you're gonna have to eat your Wheaties. I know they make a case for the cycler's, but I've never heard of a case for the solution. I guess that's why folks have it shipped wherever they're going and get the delivery guy to put it next to your cycler wherever that will be. Did you figure out when/where you will need to travel next? Manuals may be the way to go if you're only doing two a day right now (which is wonderful that that's all you need), till you get everything sorted out.
I looked up the Claria, actually it's not much different from the Amia:
renalcare.baxter.com/produc...
That video on that page makes is look SO easy, but they sorta left out a few steps
Ok this video gives more details:
youtube.com/watch?v=mHYNfKW...
I REALLY like how the cassette and organizer loads on this one. MUCH easier than mine which is very convoluted with some tubes going out the right side, others going out the left, then having to close the door while holding it all together. I need 4 hands somedays to get it right. So don't sell this machine to short yet, I'm actually liking the looks of it the way it functions. And there's an example of the person using the blue clamp to open the bags. My nurse never even suggested that. So Beachgirl had a great tip there. They're still gonna be a hassle getting out of the container bag, but at least opening them would be easier than yanking them open like I've been doing. Also the way this machine holds the organizer is MUCH better designed than mine. It just has a slot that the back of the organizer sits on and it tends to fall off a LOT, so I have to really watch it. This one looks much more securely held in place. I'll have to post some photos one day of my process compared to yours once you get yours in place and have used it for a little while. Oh she made a mistake in the video. Didn't put on a mask before connecting the solution bags to the machine tubes... Also, they don't show the extreme hand wash before connecting, or before disconnecting in the morning. And my PD nurse has me to take a 4x4 gauze, open the top, squirt in some AlCavis and then put the transfer set into it and wrap it up so it soaks in AlCavis "pouch" while I do the extreme hand washing, both night and morning.
To be honest. I actually like your machine better. And I'm not just saying that. It looks to be a LOT easier to use. Especially the cassette part. And it seems faster. My prime takes a LOT longer than 8 minutes. I'll have to time it tonight.
lol dialysis machine envy.
I’ve stumbled onto a problem … I have 2 drain bags left. And 5 green bags. And the center only has 2 bags cause her Baxter delivery hasn’t made it there yet.
Solution we came up with is since I still Jane so many yellows I’m to waste the solution and use the drain bag as if it was a separate one to get me to my March 6 delivery which I hope comes.
I was supposed to go in Mon March 6 for monthly labs but I’m going in Fri now when I should get my kt/v results.
What a mess this all is right now.
yep, mine has been a cluster from the beginning as you well know. Hey, I got boxes of manual yellows sitting in my bedroom that I'll never use. Sure wish I could send em to ya! (Your center probably wouldn't ok that idea). But yeah, waste the other solution for the drain as necessary. Heck, I'm gonna be pouring 20 bags of the stuff down the drain at some point when I get tired of it sitting here. Crossing fingers for March 6 shipment to arrive on time.
Hey, another tip I've been meaning to share and have been forgetting. AlCavis will BLEACH your clothes if you get it on them. And it doesn't take but a drop. Does your PD nurse get you to wrap your transfer set in AlCavis soaked gauze while you do your extreme hand washing like mine does? Just wondering. She said doing that kills all the germs on the transfer set before connecting or disconnecting. Not sure if everybody does that. I've not seen it in any of the videos. Well after wrapping the transfer set in gauze, I wrap paper towel around it and stick it in the waistband of my pjs. But a couple of times the AlCavis has leaked through and bleached my pjs. So just passing this along.
our is 2 min cleaning with Alcavis soaked gauze affer extreme hand washing. There are several hand sanitizer steps too.
Don’t know yet what the steps will be for the machine.
I learned a valuable lesson yesterday. During my second fill I got in a hurry and ended up with an air bubble….OMG does that hurt. After draining I thought I was having a heart attack it hurt so bad. I’m actually sore today. What ever you do don’t get an air bubble.
oh goodness I remembered learning about that air bubble in training sorry you had to deal with that I remember my nurse said you will feel like you are having a heart attack. I keep my cheat sheet out and read my directions to myself each time or I know I would have a mess up.
this 3rd exchange is really messing me up. I’m going to tomorrow off and just take my time and not worry about bed time because I have to get up early for work.
This is going to be a very hard month and I sure hope the cycler makes days easier.
I have the cheat sheet up but I guess I need to read the steps aloud too.
I have to pour it on gauze wipe down transfer set one minute before I open it. Then disconnect from fill wipe it down another minute with gauze . I’m like horsie have moments if extreme hand washing and also hand sanitizer .
Did your ship come in?
And then some. Appears when I scrutinized the invoiceS there are two separate orders so I now have 16 yellow and 16 green and a box of red clips and not the box of drain bags.
I think she mistakenly placed her order under my name. Or some other mistake..
The delivery guy was nice… talked to my husband for a bit and explained the delivery process. I was busy counting boxes. Took the day off today cause I’ve been stressing. I didn’t know you don’t have to accept the whole delivery but it was all in my name. I’m hoping the center will take some.
and now UPS dropped off 3 boxes of drain bags. And to top off a wonderful day I just got my phosphorus horse pills.
it all a k arming process isn’t it I’m just glad you got a shipment
try to put both my delivery together it wouldn’t let me this is first delivery for pd machince
This all looks oddly familiar Ha! Yep, that's my bedroom you're looking at. I'm actually thinking about getting rid of the bed and just throwing a mattress over all the boxes! I mean these are seriously strong boxes, they would hold me up just fine.
So you are definitely knee deep into it. I'm REALLY glad they are going to move on to cycler training for you. Hopefully you'll be on the machine by the middle or end of next week. AND I pray that machine is nice to you and you figure out pretty quick what is your best position to avoid alarms and drain pain. It took me a month to figure it out and I still get an alarm or two, but then I'm a slow learner.
And yeah, I still have a bunch of manual boxes sitting around that I'll probably never use before they go out of date, including the two red boxes.
So in that cycler shipment, you got the cassettes, drain bags, and all that, right? The cassette box is my biggest box. At some point, I'm thinking about storing some of those things out in my garage, like the clamps and drain bags and extensions that I never use, and I'm going to ask if heat affects the cassettes. Having one full box of those, and a partial with only a few in it when the new full box arrives takes up a lot of space.
how you doing today? How's it going? Pain any better?
little better I just start another thread healthunlocked.com/nkf-dial...
Sure wish I got an email when someone I'm "following" starts a new thread. But alas, I do not, just have to check the home page occasionally to see what's coming in. I do get an email with a "list" of recent posts, but some are three or four days old when that email comes in.
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