Cycler phobia - words of comfort?

[mmmmdeedee]

Hi all:

I am back on dialysis after 16 years of using my sister's kidney.

I am on CAPD dialysis 4x/day. My cycler came in and I'm supposed to be practicing on my dummy tummy but haven't started yet. I think I'm afraid to use the cycler.

I just became accustomed to doing this stupid exchange 4x a day and now I have to try something else. Which I want to do so I can get on with my life and not have to stop every 4 hours but just being hooked up to a darned machine all night is freaking me out a little.

Any words of comfort out there? Did anyone need to take anything to help them sleep while getting used to being on the cycler? Anyone have any valium for sale?

Dee Dee

[anja]

Hi Dee Dee,
  Lots of changes in a short time, but believe me, the change is for the absolute better!  I had all the same feelings you are experiencing  ~ found them to be unfounded .  I had been having trouble sleeping for some time before dialysis began and the doc put me on Paxil for sleep and it has worked beautifully!    The cycler is very easy to get used to since it grants you so  much freedom during the day.  I had been a restless sleeper and worried that the alarms would always go off ~~~ that also was false!  You quickly learn to disregard the little tube, as long as you have it well anchored  against your body, I use spandex biker shorts.  I let about 5 feet of the tubing hang down to the floor, coil the rest on my warm cycler bag and cover it with a nice big folded Turkish towel.  Don't wake up till I am ready to in the morning~ no pulling, discomfort or tangling up in the cord.  Viola! End of treatment!      Keep asking questions about your concerns and your knowledge will  help you  quickly get adjusted.  Best of luck,  Anja

[goofynina]

Oh DeeDee,  You are just going to love that cycler once your familiar with it,  it does it all for you as you sleep.  I too was scared of it, now, Fabio, i named it, lol, is my bestest friend,   It is really very easy, the setting up is a little time consuming at first but once you got that down, it's a breeze, a couple of minutes tops.  I too have trouble sleeping so i always add the 12' extension line so i can go to my office or to my kitchen and i am not stuck in bed,  I LOVE IT.....  Good Luck to you and remember,  dont be afraid to ask, we are here for you....

[Ginger]

DeeDee,
When I took my training, I wanted to have my husband with me the day they taught me how to use the cycler as I am a bit afraid of new technology. Turned out to be a piece of cake! I did follow the book the first few nights I set up to be sure that I did not forget any steps but after that it only takes a few minutes to set up. It really is quite easy.
Ginger

[ginger cookie]

Just out of curiousity, I think that I remember froma previous post that goofynina is using a baxter home choice cycler. Is that what everyone else is using or are there any fresenius cycler users out there? Have any of you tried both? Any comments on one's superiority over the other?

[toad]

i am on the baxter cycler.....one thing i have learned is make sure u get a quiet one...first one i had was so noisy kept me up most of the night...should barely able to hear it a night

[goofynina]

the only noises that come out of my machine is a sound like 2 marbles hitting together every so often,  other than that, it's very quiet, thank goodness,   How long do you run on yours Toad? and what bags are you using?   I am on 10 hrs. and usually 1 red and 2 greens,  i get a decent UF (i guess)  but do you ever cramp in your legs???

[ginger cookie]

I remember when the Baxter homechoice first came on the market, it was invented/engineered by some very young looking man. A few years later he designed the segue (spelling?) scooter. Now I think that's a pretty clever fellow.
Sorry, I love trivia like that. I keep hoping and waiting to see someone develop an implantable artificial kidney that perhaps requires a filter change ever 3-6 months or so.

[angieskidney]

I was on the Fresenius CCPD (Nocturnal Peritoneal Dialysis called Continuous Cycling Peritoneal Dialysis I think) and I loved it! It was my favourite (I was on Baxter when I was 16 but that was back in 1990 so I don't remember). The nocturnal dialysis is great because it sets you free! Maybe a little intimidating at first but worth it! Once you get used it to you will never want to go back to dialysis (PD) 4 times every single day!!

[mmmmdeedee]

Thanks guys. I have been on the cycler for four nights now. Still lying awake making sure I am draining enough, etc. Can't seem to get over that yet, but everything else is going fine.

Mine, Baxter Homechoice I believe, does make a few gurgling noises at night and some pumping sounds but not too bad. I also get a few alarms. Drain amounts not sufficient, and I seem to lay on my lines a lot - crimping them and setting the alarm off!

I also need to find out about the extension line. I just have the one line that I hook up to my catheter and the line to the machine. I'm about 2 feet away from the toilet!! Aaarrgh, so right now I am having to clamp off and cap off to go to the bathroom - which is at least twice a night. Can I order the extensions from BAxter same as the other supplies?

I wonder if taking at Tylenol PM would help me sleep? I hate to take more prescription drugs! Lord knows I look like a drug addict already!

[Ginger]

DeeDee,
Yes, the extension lines are ordered from Baxter the same as all your other supplies. When you call in your next order, tell them you need a box of patient extension lines. They give you 12ft more to move away from the cycler.
Ginger

[angieskidney]

Thanks guys. I have been on the cycler for four nights now. Still lying awake making sure I am draining enough, etc. Can't seem to get over that yet, but everything else is going fine.

Mine, Baxter Homechoice I believe, does make a few gurgling noises at night and some pumping sounds but not too bad. I also get a few alarms. Drain amounts not sufficient, and I seem to lay on my lines a lot - crimping them and setting the alarm off!

I also need to find out about the extension line. I just have the one line that I hook up to my catheter and the line to the machine. I'm about 2 feet away from the toilet!! Aaarrgh, so right now I am having to clamp off and cap off to go to the bathroom - which is at least twice a night. Can I order the extensions from BAxter same as the other supplies?

I wonder if taking at Tylenol PM would help me sleep? I hate to take more prescription drugs! Lord knows I look like a drug addict already!

It takes a bit to get used to. I used to alarm a lot at first but then after awhile I didn't alarm so much as I stopped rolling on my lines at night. I was on Fresenius Cycler tho but I think it is pretty much the same considering that I was on Baxter back in 1990 (boy where the machines so much bigger back then lol)!

[mmmmdeedee]

I just placed another order for supplies with Baxter. I asked the about the extension lines so I'm not having to cap off to walk around. They said they had to get the order from my dialysis unit. She put me on hold. They came back on and said that my nurse said she would rather I NOT get the extension lines. I'm not sure why but that's what she said. It seems like there would be less chance of infection if I'm not capping and recapping a couple of times a night. I guess I just have to remember to not drink anything later in the day. I am getting up about two times a night right now.

Anyone ever hear of the dialysis facility not wanting you to get the extension lines?

[goofynina]

I was afraid to use mine and they convinced me that nothing will happen, i've used my extensions everyday and so far so good... Talk to the PD nurse or even your Neph and if you tell them why you need it, they cant deny you that... come on people,  THE WOMAN NEEDS TO USE THE BATHROOM,  sheeeesh,  some people, i just dont understand how or why they do the things they say or do

[angieskidney]

Anyone ever hear of the dialysis facility not wanting you to get the extension lines?

Probably just afriad you might trip on your line and pull it out which would be very bad.



Ask your nurse why though because they probably just assume you don't Pee being on dialysis. They can't remember everyone's bathroom ability.

[goofynina]

you cant pull the extension line out, it is screwed on, not like the bags or the drain line that are put on with the cxd...

[angieskidney]

you cant pull the extension line out, it is screwed on, not like the bags or the drain line that are put on with the cxd...

I meant if you stepped on the line and pulled a little too hard on your abdomen. I think they worry about that. Of course I wasn't on Baxter this time around. I was on Fresenius this time. So I don't know the exact setup for you.

[goofynina]

oh, duh, i thought you meant pull it apart from the cassette,  but i dont think it could be hard enough to pull it out, when i got mine and i was talking to the dr. he told me when it healed the dog could get ahold of it and it wasnt going to go anywhere, lol,  that was an  ugly visual...

[angieskidney]

oh, duh, i thought you meant pull it apart from the cassette,  but i dont think it could be hard enough to pull it out, when i got mine and i was talking to the dr. he told me when it healed the dog could get ahold of it and it wasnt going to go anywhere, lol,  that was an  ugly visual...

The dog?? Eeeek!! I had to keep my cat locked out cuz she would chew on the tubing (PD) and that would kill me (Peritonitis in the worst sense)...

[Ginger]

DeeDee,
Seems to me that there is more danger of infection with you capping and recapping the line during the night when you are tired or half asleep than there would be with using the extension line.  Maybe they just do not want to pay for it. Insist on the extension lines!!!  They are safer for you.  I use the extension lines anytime I travel because I have to use the bathroom at least 2 times/night and most of the bathrooms are at least that far away from the bed.  At home I do not need it unless I do not want to stay in bed as my bathroom is within reach of the regular patient line.

[angieskidney]

DeeDee,
Seems to me that there is more danger of infection with you capping and recapping the line during the night when you are tired or half asleep than there would be with using the extension line.  Maybe they just do not want to pay for it. Insist on the extension lines!!!  They are safer for you.  I use the extension lines anytime I travel because I have to use the bathroom at least 2 times/night and most of the bathrooms are at least that far away from the bed.  At home I do not need it unless I do not want to stay in bed as my bathroom is within reach of the regular patient line.

Ya I agree! I had to literally put my machine on pause and roll it (Fresenius Cyclers you can do that but they are heavy and hard to push on carpet ...). I wish I knew about the extension lines back when I was on CCPD and still had the ability to pee ...

[mmmmdeedee]

I am going on vacation starting this Friday. I didn't even think about bathroom trips then! We're staying in a 6-bedroomhouse so hopefully I get a room that has a bathroom in it. So many things to think about during a trip. I am going to see the nurse this Thursday so I will ask her about the extension lines.

Silly question. What are the immediate signs of peritonitis. I keep reading you guys talk about it and am scared to death!

[goofynina]

Well, if you get pain and you dont know what its from, that MIGHT be a sign, also if you have a cloudy drain bag (not too sure how your draining) that is a definet sign.  Or, you may run a slight fever and get the chills, i always had the chills so that didnt do me any good, but when i did have peritonitis i had the cloudy bag and the fever. 

[angieskidney]

I am going on vacation starting this Friday. I didn't even think about bathroom trips then! We're staying in a 6-bedroomhouse so hopefully I get a room that has a bathroom in it. So many things to think about during a trip. I am going to see the nurse this Thursday so I will ask her about the extension lines.

Silly question. What are the immediate signs of peritonitis. I keep reading you guys talk about it and am scared to death!

When I had Peritonitis I got a bad abdominal pain but I thought it was from having the runs as for some reason my drains weren't as much as before (maybe that was a sign as well??). My bags weren't cloudy until the day I was in so much pain there was no doubt so not like I could go by that. Basically ANY abdominal pain needs to be checked out (easier in Canada where all doctor visits, clinics and emergency room visits are 100% covered).

[mmmmdeedee]

Thanks again guys! My computer at home was down so I could not respond until now!

I still haven't been able to get the extension lines. I will ask again though. Pain in my abdomen has just been at the exit site. It's a little puffy. I heard you guys talk about "cream" or something. Is that like Neosporin? Do you guys put any anti-bacterial cream on your exit site?

Thanks!