I started PD at home last week, 3 exchanges a day. I was pretty nervous the first time I was all by myself, but I went slowly and kept my instruction list at hand, and by the end of the third exchange that night, I felt pretty confident. The reality of manual PD is that it's incredibly time-consuming. I work full time, and PD is easily an additional 8 hour a day job, between the cleaning and the draining and the filling and the dwelling and the draining and the cleaning up. You get the idea. I get trained tomorrow on my cycler (a Baxter Amia), and I told my PD nurse that I NEED the machine, because I can't keep getting up at 3:30 in the morning so I can do an exchange before I leave for work, and then having to stay up until 10:30 at night to do my 2 night exchanges. Other than the time it takes, the other annoying thing is the draining, because I have to stand up, sit down, bend from side to side, bend way over and straighten up again, and tighten and relax my stomach muscles in order to get all the fluid out. As my PD nurse told me, "You have pockets." The solution goes into all the little crevices in your gut, and you have to work at squeezing it all out for the last five or ten minutes or so of draining. I can feel there is solution in my belly, but it doesn't hurt (be sure you warm it sufficiently first), it just makes me feel full, like I've had a good meal. It does make me feel too full to eat much for dinner, but I can manage a protein bar or some coconut milk yogurt and two little Cutie oranges. Next week: I'll let you know what the machine is like.
My 1st week of PD at home: I started PD at... - Kidney Dialysis
My 1st week of PD at home
Best Wishes !!....Keep us posted on your Journey..
Hi AlizarinCrimson, sorry but you made me smile with that post. I know exactly how you feel regarding the standing up, sitting down, bending up, bending down etc etc. I was fortunate that I got my catheter fitted and they started using it a week later as I took a turn for the worst and they wanted to start me on dialysis so they tested it manually and it was fine. Couldn't cope with the drain pain as I was quite sore so they ended up putting me on the machine straight away but i had to lay flat all the time and the drain pain with that at the start was unbearable. I was told to do the PD dance where I laughed and told them to stop taking the mickey out of me by trying to get me to dance. I now find myself doing the PD dance just to try and get every but of fluid out especially when the drain starts to slow down. I got the machine delivered about 2.5 weeks after I initially got admitted and have been on the machine since (nearly 3 months) and found it testing at the start but it's starting to become quite smooth and hassle free, still get the odd night when I'm up with it but generally I sleep right through the whole 8hr cycle. Downside is I don't really know how to do the manual exchanges but I don't let that bother me as I feel I could pick it up straight away as I picked up the baxters machine very quickly. One thing it has done to me is it has changed my appetite that's for sure, I can still snack but when it comes to dinner I can only manage small main courses now as I do get bloated. Good luck and let's know how you get on.
Good luck. I hope u get on the cycler. U just described my life waking up at 3:30 am. I am so exhausted by Friday night that all I can do is sleep.
Cheers to you! I’m sure it will become second nature soon. I expect to get the word on Monday that it’s time for me! Keeping you in my prayers 😊😊
How’s it going at this point? Are you using the cycler yet? I’d appreciate hearing an update.
Jayhawker
So, here's how it's been going: I've been on the cycler for just about two weeks, and I'm really frustrated. The set-up is easy (I've got the Baxter Amia, and there are step-by-step instructions on the screen), but the draining is hard. I feel like I did way back when I had a newborn. I have to get up two or three times a night (I do three exchanges) for twenty or thirty minutes. Sometimes I only drain a few hundred ml and it stops and the alarm starts going off. My PD nurse switched me to tidal exchanges, but it's not the last 300ml that's the problem. It's most of it, pretty much every exchange, every night. Last Friday I saw my nephrologist and asked him if I could do manual exchanges that night, just so I could get it done and get a whole night's sleep; he said yes but he doesn't want me to do that all the time. The worst are the nights when I'm not draining enough and the alarm is going off, and the cycler demands an extra drain, and I'm bending and twisting and practically standing on my head and nothing is draining, and the alarm keeps going, and I want to cry. I ask the cycler, "What the hell do you want me to do about it? I can't turn myself inside out!" Last night it demanded two extra drains, and finally gave up, with ~600ml still in my belly, and then it filled with 300ml more for the final fill. So I'll be giving my PD nurse a call today, but I'm not sure there's anything to be done. I've looked all over the internet for the super-secret tip that will let me sleep and save my sanity, but there isn't one. I feel betrayed. I thought I was just going to adapt to this new stupid thing (dialysis) in my life, and it would smooth out and just become part of the new routine, and instead, I feel like this machine is just asking too much. it was supposed to be my friend but it's turning into my enemy. I do NOT do well without adequate sleep. So today I'm feeling exhausted (up at 3 a.m., couldn't go back to sleep after I got my heart rate up and my brain started going), and I know it's going to be a rough day at work, and tonight I'll have to GO THROUGH IT AGAIN. Thank you for listening to my vent.
See the post concerning my experience with the Amia cycler. PLEASE add any additional information you might add for folks to read concerning how your experience went over time with the Amia:
Just curious; why does your nephrologist want you to use the cycler rather than manual exchanges?
Jayhawker
I don't know, but I'm doing them again tonight. I wanted to get the cycler because I work full time, and there's nowhere at work to do an exchange, so I was doing one in the morning (2-hour dwell time), and then two at night. I leave for work about 7:15 and don't get home until 5:45, so basically I was getting up at 4:00 a.m. for the morning one, and having to stay up until 10:30 or so with the evening ones. I can't function on five hours of sleep a night. I thought the cycler would be the perfect solution. Now I'm going to do some research and see if I could do just two exchanges a day, with a higher percentage solution. I imagine I'll meet with some resistance, since most doctors I've known don't like it when you have ideas of your own. Ah, I'm just in a cranky pants mood today.
I’d be interested to know if your nephrologist will allow 2 manual exchanges a day.
Jayhawker
I ended up using the cycler instead of doing the manual exchanges. It still wants more mL than I think I've got, because I don't have edema, so I don't know where the extra is supposed to come from. But last night I discovered something: if I roll over onto my belly in bed when I hear that first alarm, it helps keep the alarm from going off again. I'm not naturally a stomach sleeper, but if this is what it takes, I'll be a stomach sleeper. Last night was the best night's sleep I had on the cycler since I got it. It was awesome. I feel like I tried rolling onto my belly early on, but it didn't work. Or maybe I didn't stay in that position long enough (it's not comfortable for me). Hopefully this is the end of my furious quest to get some damn sleep!
Really glad you had a better nights sleep last night. I don’t function well when I don’t get much sleep either...
Jayhawker
Are these exchanges based on your weight? So would a smaller person have to do less?
We need the AWAK wearable Kidney NOW !!!
I am sorry for what you are experiencing miss cranky pants! I too am searching for that miracle cure to my inability to sleep.
I had kidded with my PD nurses about them wanting to see me do the "pole dance" as they witnessed my manual draining techniques!
Are they addressing you retaining any extra fluids? I may have missed it in your posts but do you have ultrafiltration?
It took the replacement of my PD catheter to allow me "more normal" drains. I was putting in more fluid than was coming out. My issue pertained to the catheter style that was initially placed in me. Go easy on the higher strength solution because you may exhibit cramps.
I raised the same question in terms of combined manual/cycler treatments and believe that patients should have the right to choose. I am on my cycler for 10.5 hours plus, do a midday manual drain. If I were able to adjust my total night treatment time, by doing one or two, however many that I may choose, manual treatments per day, then I should be able to do so. If the power goes out then I will have to do manuals. If I have time to do manuals during the day, then I should be allowed. Adjusting the cycler settings is where I am at right now.
I am also working on a AWAK (as RhwnSutchess123 replied) style device plus, several other devices pertaining to patient-driven innovation for PD Home Therapy.
Deputy Director Eric D. Hargan of the HHS stated, "Dialysis doesn't look much different than it did 60 years ago. More innovation is needed because patients deserve better."
This kidney failure has revealed my purpose here on Earth and that is to execute the patient-driven innovation. Some ask me how in the world I expect to do so and I tell them that I don't, God does. He is just using me to throw rocks at giants!
Well, bless your heart. I wish you all the success (and funding) you can get. Every time I see my nephrologist I complain to him, "This wouldn't be happening on the USS Enterprise. They would just wave a tricorder at me and my kidneys would be fixed." He's no longer amused.
You are correct! I am in discussion with a medical device start up on one end and with someone from ASN, asking for their blessing on the other.
A little confused by NKF now asking me to send a letter to my Senators for support when not more than a month ago, they were publicly pushing back against home therapy and the goals set forth in the AAKH EO. God has this!
Do you drain off extra fluid? Are you sure that your peritoneal catheter placement is not the problem? I hope that you/they get it figured out.
What do you man when saying that you’re working on the AWAK? I thought that was still undergoing some sort of large study in the USA and is not yet FDA approved therefore not yet available to patients? Are you trying to participate in this large study?
I’d be interested in any information you could share. I’ve been keeping an eye on the AWAK project; I’m very interested in that form of dialysis when it becomes available. This is of course when it’s time for me to start dialysis; I’m not quite there yet but am in Stage V.
Jayhawker
Jayhawker, It never occurred to me to become involved in the Dialysis Community or any support group, for that matter, prior to kidney failure. I applaud your efforts and interest. Do you have a family history of CKD or ESRD? I enjoy conversing here. Now that I am here, I have jumped in with both feet. I am in search of whomever is in charge of dialysis.
Back to your question, I have a background in product development in the medical device manufacturing industry. My background, along with my condition has placed me where I am at today; Executing Patient-Driven Innovation for PD Home Therapy. I am doing this for folks like you so that you may do Home Therapy on a system that is Patient Made and not the existing, archaic system. I hope to benefit but that depends upon a transplant and the Good Lord!
I am looking to fundamentally change PD home therapy for function and ease of use. As HHS Deputy Director Hargan stated, "Dialysis doesn't look much different than it did 60 years ago. More innovation is needed because patients deserve better." I couldn't agree more! That statement was in reference to Kidney X. By the way, congratulations to all the winners. I submitted but did not win an award. No Gold Ticket to Hollywood!
God has placed me here to lead this effort for patients, as a patient. I have several projects in the works and look forward to sharing them with you and the community in many ways very soon!
Aww...I remember that...I say to myself every damn night, "Self, remember when you thought manual exchanges were a pain in the butt? You didn't know anything then!" The cycler is still waking me up 3 times a night to dance around. I'm starting to wonder if it's even functioning the way it should. Maybe I got a broken one. I should call Baxter tech support.
My cycle does not wake me to drain I use the Home Choice Pro cycles.
I also have the Amia machine. You will get used to the liquid in side you it’s just a matter of time. I just stand up move around to try to get out all the liquid. Hang in there it will get better I have 1 year doing PD and yes the machine still alerts me and I turn to the side to drain or get up for 10 minutes and then go back to sleep.
Where are you in your journey? Are you still on the Amia? Did you always have to stand up multiple times a night to drain. I've been having to do the same. See my post here:
Love your set up. Good luck.
I was the same! It’s funny, when you tell the nurses and doctor that they act like you’re the only one who’s ever told them that and you know that’s a lie
Do you still get Cycler alarms. Here's my initial story:
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