I have started off on cycler (CCPD) last night and thought I would pen down my experience for those who may be considering to go for cycler / not to go for it…
I am 35, male. Had my first transplant about seven years ago. My kidney failed again about 9 months ago. As I am still working, I wanted to move onto PD soon as possible and moved onto PD last December. The objective of moving onto PD is to go on to cycler soon as possible. But due to some problems on the catheter, my travel schedules etc. I could not get trained till the end of June and yesterday was my first day.
It took me almost an hour and a half to set it up and prime (basically, to get it ready so that I can connect myself). I am sure it should not be taking that long, not more than 30 minutes, but I did it very slow, had a couple of missteps on the way etc. I am sure as I go along, I would improve.
My biggest worry is that I would sleep over the tube and then, the alarms would go off…this kept me awake well into the night, till about 1 am. But nothing happened…after that I slipped into sleep. I got up once or twice in between, but nothing major or no alarms. In the morning, it took me about 7-8 mts to wind up.
I need to still do one day time CAPD. But still, the feeling is of freedom. I had felt very free when I switched into PD from Hemo, as it gave lot of flexibility to my life. I had to travel on my work and while on CAPD, I actually could resume travel to the places where I can go by car and stay for few days (I could never plan two weeks in advance to get supplies directly). The feeling of having the whole day for myself - not even have to plan for 5 dialysis a day - and build your day as you like is even more freedom…and I think I would enjoy this…
I had just seen a note on the dialysis being bad etc…but as someone already responded…we can do everything on our own, and it is even more comforting with CCPD…what else can we ask for…when something is inevitable, lets start enjoying building life around it…
I would keep you guys posted for the next couple of days on my experience…and see if anything changes…
After three days, I think I am slowly getting into the groove for the cycler. Now it does not take more than 15 minutes for me to prep. I had one alarm on the second day requesting me to check the patient line (the inflow/outflow line connecting to my catheter). I think I pressurised it during my sleep and I readjusted.
I am able to sleep face up and one side (the other side, I am not daring, as it would mean turning away from the machine) and I do not see any problems in these two postures.
For me, the only issue is to spend 9 hours on cycler, but I guess my body demands it. So, I am trying to readjust my sleep time, such that I can get off the machine early in the morning.
I don’t know if they have told you are not - but, when you are using the cycler, you can actually disconnect once your machine goes to the dwell cycle.
You do your drain, then fill, which takes maybe 30-35 minutes - then when you hit the dwell cycle you can disconnect & do whatever you want for the next 2 1/2 - 3 hours. You just need to remember to get back in time to wash up before reconnecting; if you are late connecting, the alarm will sound (loudly) until you are connected. It works great, ask your PD nurse about the extra cap to disconnect. Just gives you a little more freedom! Good Luck! CJ
The idea of disconnecting sounds very great…would check out with the Nurse. However, quick question – do you clamp the lines when disconnecting and keep the machine on or switch the machine off ?
Thanks for the idea…
The line that is from the machine to your catheter you will clamp it & cap it off with another cap called a flexi-cap; then you will use a mini-cap just as you would on your daily disconnects. (the machine is still running - you won’t change any settings any different from before) No more being tied to the machine the entire time!!
I don’t know which distributor you use, but I know it’s available through Baxter. Just remember if you disconnect often, you will need to order not only the flexi-caps, but also extra mini-caps. Hope this helps! Good Luck CJ
Hey “Guys” - let me throw in my two-cents about the cycler. I’m not on it but my 83-year old mother is. When she first started the cycler she was staying with me, until she got the hang of it. For about two weeks she had bells and whistles going off very night. It told us it was drainage lines, and she would learn to correct. Also she didn’t drain as well, or at all, with the “yellow” bag. We finally moved her back home and guess what - no bells or whistles. Everything was running smoothly - even the “yellow” bag started draining. Either her home bed, location of the machine, or “me being out of her hair” turned things around. Whatever the reason she is very happy with the results and being able to sleep the night through. She’s very independent and determined to make this work on her schedual. With the “bags” now draining properly, her swelling is down, her blood pressure is down, and she is feeling much better. Maybe it was getting me out of her hair for awhile that did the trick.