I've Got a Cycler! It's GREAT!

[mallory]

I've got a PD cycler!  I started dialysis on December 7th, and I started with the cycler on December 26th.  It is a lot better than the manual daily exchanges.  I feel like I have more freedom.  I don't have to go home on my lunch hour to do a dialysis exchange, it's very nice.

There are still some things I'm having a little trouble with.  The lights on the darn thing light up my bedroom like an airport runway, and the noise that it makes still keeps me awake.  They set it so that it will only alarm if I get below 85% on a return, and that's good, but it still bothers me if I get a negative UF in the morning.  It seems like if I get a big initial drain, the total UF is small or negative, but if the initial drain is smaller, the total UF is larger, so I think it's okay, but it makes me wonder. 

It is better than the daily exchanges, but I can't compare it to hemo because I've never done that.  I really admire some of you who have done this for so many years.  Every once in a while I'll look over at that machine glowing there in the dark and I think "OH MY GOSH!  I'M ON DIALYSIS!  HOW DID THIS HAPPEN TO ME?"  It's like my mind hasn't really come to terms with what has happened to me yet.  I think that feeling will go away after a while.

It's like I told my dialysis nurse.  She said she was sorry this was happening to me and I told her "Hey, it's not as good as dating Matthew McConaughey, but it's better than being dead."

And being on a cycler is better than doing manual exchanges!

[goofynina]

Girlfriend, you got that right,  NOTHING is better than dating Matthew McConaghy (sp) but it sure is better than being dead AND the cycler kicks manual exchanges ass   Believe me, you will get used to the noises and the light but make sure you monitor that total UF, you dont want to reabsorb fluid    Good Luck and keep us posted

p.s.  Have you named your cycler yet?  My cycler is named Elvis so get to sleep with 2 men at night

[mallory]

Maybe I'll name mine Matthew......

[Sluff]

Maybe I'll name mine Matthew......

You could name it Sluff, I won't be disappointed. 

[tamara]

Maybe if your adventurous, you could change it's name everyday of the week!               

[Ohio Buckeye]

Mallory, I'm glad it sounds like you are adjusting well.
If you are having large initial drains you might want to
do a manual drain at the end of the cycle.  I found out
that when I started doing a manual drain that a lot of fluid was left in me
and I didn't want to carry that around as you do absorb it if it is in
there for a long time.  Just click to manual drain and hit go.
I just watch the numbers as it drains, usually starts pretty fast and then
when it starts draining real slow and takes longer to get to next number
I hit stop.  You might try that.  The first time I tried it I've did it
ever since.  Numbers varies but sometimes there will be a large amt. left in me
especially if the alarm had went of during the night.
Just an idea.

[kitkatz]

Name is Igor, that way you could be the mad scientist with the machines in the bedroom.  Muhahahahaha!

[anja]

Good going, Mallory, glad you are liking the cycler!  The way I softened the added light it emitted was with a mask taped to the top over the light.  I can easily flip it up to read it should the alarm sound, but it rarely ever does anymore.  As for the noise, I have it sitting on the heavy -duty foam packing that came with it in sections~ and I have now moved it OUT of my bedroom and into the hall.  My 3-prong cassette has about a 20 foot cord and I can go to my computer room, reach the kitchen and the bathroom, now that I put the table in the hallway.  Much quieter and less lighted!  Good luck!

[angela515]

Just wanted to check up on you and see how everything is going with your cycler?

[mallory]

Things are going very well.  I taped an index card over the display, that way I can lift it up if I get an alarm but the light isn't quite so bright.  I talked to my dialysis nurses about why my returns are so low, they are okay with it because of the amount I still urinate.  They also said they were fine with me doing the bypass on the initial drain if it was hurting, so I will try that if it happens again.

I'm getting more used to it.  It is SO much better than the manual exchanges.  Thanks to all of you for your advice!

[Wattle]

Hi Mallory,
I am new to the board and also on PD. I also have a cycler (Fresenius Sleep Safe). I have been on PD 19 months (not counting) but I had to wait 6 months before they could get me a cycler. It really did my head in. The manual exchanges take over your life! I was sooooo happy to get the machine. I still do one exchange during the day, generally late in the afternoon. You will get use to the alarms and the lights, I am able to dim the lights.  I now have a lot more freedom. It is much easier on my family as I now feel "semi normal". I still haven't named mine and am open to suggestions!

Wattle (Australia)

[Bajanne]

Hi Mallory,
I am new to the board and also on PD. I also have a cycler (Fresenius Sleep Safe). I have been on PD 19 months (not counting) but I had to wait 6 months before they could get me a cycler. It really did my head in. The manual exchanges take over your life! I was sooooo happy to get the machine. I still do one exchange during the day, generally late in the afternoon. You will get use to the alarms and the lights, I am able to dim the lights.  I now have a lot more freedom. It is much easier on my family as I now feel "semi normal". I still haven't named mine and am open to suggestions!

Wattle (Australia)

Hi Wattle!  Thanks for sharing!  We would love to get to know you as well.  Could you please go to "Introduce Yourself" and do the honours?  Pretty please?  We have quite a group from Oz here now.
Bajanne\Moderator

[mallory]

Hi Mallory,
I am new to the board and also on PD. I also have a cycler (Fresenius Sleep Safe). I have been on PD 19 months (not counting) but I had to wait 6 months before they could get me a cycler. It really did my head in. The manual exchanges take over your life! I was sooooo happy to get the machine. I still do one exchange during the day, generally late in the afternoon. You will get use to the alarms and the lights, I am able to dim the lights. I now have a lot more freedom. It is much easier on my family as I now feel "semi normal". I still haven't named mine and am open to suggestions!

Wattle (Australia)

Wattle, You're right, the cycler is SO much better than the manual exchanges!  I don't know how you could stand the manual exchanges for six months, I don't think I could have done it with my job.  They did tell me there is a way to dim the lights, but they didn't want me to do it.  I say it's not in their bedroom, so I can dim the lights if I want to.  I'll read the instruction book and see how to do it.

I haven't named my cycler yet, either, I'm leaning to Matthew, but I might go with Dracula because some nights it sucks my guts out.  Sorry, that wasn't very ladylike!

And, hey, welcome to the board! 

[melshell]

What? Name your cycler? OMG!! I've had mine for a month, and I haven't named mine either!!!  ....hmmmm....really like Dracula, 'cause I'm having the "sucking" problem too-it's still waking me up at the end of every drain cycle threatening to pull out a hunk of my lining!! (I may be exaggerating just a tad there, but OUCH ALREADY!!???!!!!) Dracula'd be better suited if it were sucking blood..I kinda nick named mine "the ole' ball and chain" on my myspace page..."LUCILLE"!! That's what I'm gonna name it!! (Lucille "Ball")........LMFAO!!! Yipeeee!! Thanks guys! lol!! Congrats on finally getting your cycler btw, and welcome!

MANUAL EXCHANGES FOR 6 MONTHS!! Your are definitely my new hero!! YIKES!!

[mallory]

I like Lucille Ball, Melshell, that's funny!  I'm leaning to Matthew for Matthew McConaughey, because Goofynina said she named hers Elvis so she could sleep with two men.

And the sucking problem, it is awful, isn't it?!

If I name mine Matthew I'll only get to sleep with one, but maybe I can get a REAL one later!

[Ken Shelmerdine]

I think I'll call mine Dave. Haven't a clue why.

Mallory I always get a negative UF of about -115 so I do a manual drain at the end of therapy and I usually get about 260ml out giving a positive of about 145 most mornings. I have just had an adequacy test and my home sister said the dialysis is more than adequate so don't worry because when you think about it you don't want to induce fluid removel by dialysis when your kidney's are still doing it naturally. The longer you remain peeing the longer you have without fluid restrictions. Even though UF may be negative, the dialysis is still removing blood toxins.

The sound the cycler makes is a pain, have you tried sleeping with earplugs?

[nextnoel]

I think I'll call mine Dave. Haven't a clue why.

NO, DON'T DO IT!   Remember, Dave was the name of the computer that went horribly wrong in "2001:  A Space Odyssey"!

[Ken Shelmerdine]

  TOO LATE, I've had it baptised! His god parents would not be happy!

[nextnoel]

Oh, well, I tried!

[anja]

   you guys are TOO MUCH!   Such quick wit, glad you share with us, gives me a giggle before bed...   

[shay_pcb]

Things are going very well.  I taped an index card over the display, that way I can lift it up if I get an alarm but the light isn't quite so bright.  I talked to my dialysis nurses about why my returns are so low, they are okay with it because of the amount I still urinate.  They also said they were fine with me doing the bypass on the initial drain if it was hurting, so I will try that if it happens again.

I'm getting more used to it.  It is SO much better than the manual exchanges.  Thanks to all of you for your advice!

I didn't read the entire thread, but as far as I read, you still hadn't figured out how to dim the lights. If it's the Baxter HomeChoice, then when the screen says "Press GO to start" press the down arrow. There should be a few menus in there. I can't remember exactly where it is, but it won't hurt to explore it. That's what I did. There's a place in there to make it so that the lights go off completely except for a dot that moves across the screen to let you know that it's still on after no buttons have been pushed for 5 min. There's also a place on there to lower the beep sound to where ever you think is comfortable; not too loud but loud enough to wake you up. Let me know if you find it ok!!

[Wattle]

Dracula..... I like it! Or Bleeeeeep either one!

Melshell, The six months was NOT my choice. I was rather testy by the end of it and my friends were ready to have an auction and buy me a cycler. The hospital has its polices and will not budge. They make it quite hard to get one. But I have had it now over a year ... and I take very good care of it! I still do one manual during the day but that is o.k.

[shay_pcb]

Things are going very well.  I taped an index card over the display, that way I can lift it up if I get an alarm but the light isn't quite so bright.  I talked to my dialysis nurses about why my returns are so low, they are okay with it because of the amount I still urinate.  They also said they were fine with me doing the bypass on the initial drain if it was hurting, so I will try that if it happens again.

I'm getting more used to it.  It is SO much better than the manual exchanges.  Thanks to all of you for your advice!

I didn't read the entire thread, but as far as I read, you still hadn't figured out how to dim the lights. If it's the Baxter HomeChoice, then when the screen says "Press GO to start" press the down arrow. There should be a few menus in there. I can't remember exactly where it is, but it won't hurt to explore it. That's what I did. There's a place in there to make it so that the lights go off completely except for a dot that moves across the screen to let you know that it's still on after no buttons have been pushed for 5 min. There's also a place on there to lower the beep sound to where ever you think is comfortable; not too loud but loud enough to wake you up. Let me know if you find it ok!!

i went back and found out exactly how to do it. you'll have to forgive the typing, i'm on a cell phone. anyway, when the screen says 'press go', press down twice to 'make adjustments', press enter, press down twice to 'auto dim', press enter then up or down to select yes. i think you can get it from there! lol

[nextnoel]

Ken, good news - you're safe!  I realized last night that "Dave" is the name of the astronaut, and "Hal" is the computer's name.  Must have had a senior moment.

[mallory]

i went back and found out exactly how to do it. you'll have to forgive the typing, i'm on a cell phone. anyway, when the screen says 'press go', press down twice to 'make adjustments', press enter, press down twice to 'auto dim', press enter then up or down to select yes. i think you can get it from there! lol

Shay, Thanks, I'm going to try it.  Some nights it isn't a problem, but most nights the lights still bother me. 

I'm getting used to the noise, but here's a new one.  I used to just use one bag of 1.5% solution at night.  Now, they switched it so I use the 1.5% during the night, then the final fill is 2.5% solution so it has two bags hooked up.

So, at the end of the 1.5% cycles, the machine drains the 1.5% bag and refills it with the solution from the 2.5% bag so that it gets heated, do you know what I mean?

At the end of the 1.5% cycles, when it's draining the bag so that it can refill from the other bag, it just keeps sucking and sucking!!  It makes a sound like someone has reached the bottom of their drink with a straw and they just keep sucking!  For heck's sake!! the @#$! bag is EMPTY!!

It must do the same thing when it's trying to drain us, that's why it hurts. 

I really am getting used to it.  I had chemo on Monday and an endoscopy yesterday, so I probably just wasn't sleeping well last night.  I just wish we could all get transplants and be able to sleep in dark, quiet rooms....