I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: mallory on January 02, 2007, 02:59:22 PM
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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!
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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 :2thumbsup; 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 ;)
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Maybe I'll name mine Matthew...... :2thumbsup;
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Maybe I'll name mine Matthew...... :2thumbsup;
You could name it Sluff, I won't be disappointed. >:D ;)
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Maybe if your adventurous, you could change it's name everyday of the week! ;) >:D
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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.
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Name is Igor, that way you could be the mad scientist with the machines in the bedroom. Muhahahahaha!
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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!
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Just wanted to check up on you and see how everything is going with your cycler? :)
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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!
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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)
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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
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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! :welcomesign;
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What? Name your cycler? OMG!! I've had mine for a month, and I haven't named mine either!!! :o ....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!!
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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! :2thumbsup;
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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?
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I think I'll call mine Dave. Haven't a clue why.
NO, DON'T DO IT! :thumbdown; Remember, Dave was the name of the computer that went horribly wrong in "2001: A Space Odyssey"!
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:o TOO LATE, I've had it baptised! His god parents would not be happy!
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Oh, well, I tried! ;D
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:clap; you guys are TOO MUCH! Such quick wit, glad you share with us, gives me a giggle before bed... ;D
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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!!
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:clap; Dracula..... I like it! Or Bleeeeeep either one! ;D
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.
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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
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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. :-\
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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....
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Oh thank you thank you for all your great info. I am going in for my PD catheter on Feb 1st. This was my New Year's resolution to start PD...I am excited, nervous and slightly worried. Dear sweet Goofynina and Ginger have been so kind to give me such good advice. I have been on hemo for eight months and what I wanted to ask all of you is.....what are the pro's and con's of PD for you.
I have been thinking about a "clever" name for my machine and I have been working on "tastefully" adding it as a decor to my French Provence bedroom! I am trying to make the BEST pitcher of lemonade with my lemons!
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Nan, You'll be fine. I was so scared, and it really is okay. Just take it one day at a time. The first few days I was on manual PD, I thought that I couldn't possibly do it for the rest of my life, because it took so much time. But, then it got better doing the manual exchanges, and much better with the cycler.
Truly, most nights I sleep fine and the cycler doesn't bother me. It's just on nights when I'm already having trouble sleeping that I lay there and look at that bright, bright display and listen to the endless sucking and gurgling noises.
You really will be okay, ask us any questions you want, we're all here for you!
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Mallory, please let me know if you get it figured out, okay?
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Nan, You will do it with ease. You have already been on dialysis for 8 months so this is just a little side step. The diet restrictions are less and it all happens while you sleep. O.K the catheter takes a little getting use to. It just makes you more interesting :o I was very self conscious to begin with. With time it will all be o.k and you will be happy with your choice... I am. :)
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Thanks Mallory and Wattle, I think as the days get closer, I just get a little more nervous. My family is not 100% behind me on this decision, they like that there is someone "qualified" to be watching over me during dialysis. So here is my first question to you....did you retain water and gain weight when you started PD...if so....were your nurses able to get things settled so you did NOT retain fluid and lose weight?
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Thanks Mallory and Wattle, I think as the days get closer, I just get a little more nervous. My family is not 100% behind me on this decision, they like that there is someone "qualified" to be watching over me during dialysis. So here is my first question to you....did you retain water and gain weight when you started PD...if so....were your nurses able to get things settled so you did NOT retain fluid and lose weight?
You do all of it yourself. You watch your weight and take your BP everyday to decide what strength bags to use. You'll get the hang of it. It's really easy. I'm only 19...practically still a kid...and I can do it! lol You'll be just fine!! :thumbup;
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Nan, Shay is right, the good thing about PD is that you can control so much of it yourself. You weigh every morning and take your BP, and if there's an issue you can change the strength of your solution.
I gained weight the first few days, but now it's leveled off. I'm still not losing, and I wish I was, but at least I'm not gaining anymore. The hardest thing for me was getting used to the full feeling with all that fluid in me. I'm only five feet tall, so there's not that much room for the fluid. The first couple of days I felt like I couldn't breathe and I could hardly eat anything. But it's much better now.
Just don't forget to close the roller clamp on your catheter. That's been my biggest mistake so far, I forgot to close the roller clamp and I disconnected and shot PD solution all over the place. That was fun to clean up!
You can do it, and we're here for you!
Shay, I forgot to change the lights before I primed the cycler last night, but I'm going to do it tonight. Thanks for the advice!
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Thanks Mallory and Wattle, I think as the days get closer, I just get a little more nervous. My family is not 100% behind me on this decision, they like that there is someone "qualified" to be watching over me during dialysis. So here is my first question to you....did you retain water and gain weight when you started PD...if so....were your nurses able to get things settled so you did NOT retain fluid and lose weight?
I was on PD for 2 1/2 yrs, and I loved it. I was actually losing weight the last few months when I started changing my eating habits and started exercising. I loved PD because you control it yourself, you do it while you sleep so you dont interfere with your life, and your diet is far less restricted than hemo.
Good luck hun!
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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.
:2thumbsup;;Great, I'll cancel the excorcist then shall I
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Wattle: guess I take alot for granted here in the U.S. --there was no waiting period for my cycler, I only did manual exchanges during training after 2 wks post op, then I trained for a week, and took my cycler home with me the last day...
Nan; no worries about PD, you'll love it!! The cath. surgery is no biggie either, mine was same day, and relatively painless. It takes some getting used to--it's something foreign protruding from your body, and it's not totally without pain, but tolerable. Be wary of tape!! I didn't have a tape allergy previously, but developed a raging one post catheter!! -think it must be related to the sensitivity of the skin in that area??? As far as the PD is concerned, I'm thankful every day that it's the route I chose! My days are free, I have virtually no fluid/dietary restrictions, and because I do it at night, I get to sleep through it...well, most of the time. I'm still learning to deal with the fullness, and I have drain pain at times, but I feel like I'm in charge, like I somewhat have control over what's happening to me, and less like I'm some victim of some dreaded disease. I wish you much luck! Keep us posted, make sure to post any questions, we all learn from each other!!
I laughed out loud about the gurgling!!-I almost turned my machine off that first night when it did that! I thought it was tearing up!! LMAO!! You get used to the lights, and the noises, and the gurgling though, atleast I did. Thanks for the kudo's on "Lucille" too- I got tickled at my own self, but the name suits her....I'm thinking I'll buy her a curly red wig, and a faux pearl necklace, and even put a nametag on her with her name in cursive and a red lipstick kiss!! hee hee! I'm still a "newlywed" (after 17 years-THANKFULLY!!) So hubby's the only man I want in the bedroom.....besides, somebody else was already contemplating Mathew McConaghey-sp? and he was MY second choice!!! LOL!!
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Nan, Shay is right, the good thing about PD is that you can control so much of it yourself. You weigh every morning and take your BP, and if there's an issue you can change the strength of your solution.
I gained weight the first few days, but now it's leveled off. I'm still not losing, and I wish I was, but at least I'm not gaining anymore. The hardest thing for me was getting used to the full feeling with all that fluid in me. I'm only five feet tall, so there's not that much room for the fluid. The first couple of days I felt like I couldn't breathe and I could hardly eat anything. But it's much better now.
Just don't forget to close the roller clamp on your catheter. That's been my biggest mistake so far, I forgot to close the roller clamp and I disconnected and shot PD solution all over the place. That was fun to clean up!
You can do it, and we're here for you!
Shay, I forgot to change the lights before I primed the cycler last night, but I'm going to do it tonight. Thanks for the advice!
I wish I had only gained weight the first few days! lol I gained weight slowly for the first 6 months. I'm just now staying at my current weight. I weighed 110 lbs before i started PD. Now, after 8 months, I weigh 133. I hate it. I wish I could lose the weight, but I'm too lazy!! lol
I'm only 5'3", so I feel that really full feeling too. Luckily, I'm dry during the day, so I can eat a little more than when I was wet all day long. Now my only problem is heart burn everytime I am full of fluid. Does anyone else get that?
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My cycler doesn't make too much noise.
I have mine turned not facing the bed but horizontal on the nightstand with the bed
so the lights really don't bother me. Just an occasional alrarm.
You' do great Nan and find it not too hard to adjust to. It seems like
everyone is terribly nervous and scared at first because of all the unknowns
but it is not as bad as our imaginations take us to, at least it wasn't for me.
Best wishes to you.
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Nan
Here's another post to tell you not to worry about CCPD. Mallory is right you do get a feeling of being in control. I had minor problems at first with drain alarms but that soon got sorted. I was devastated when I was told it was time for dialysis even though I had been expecting it for some time but the longer I used the cycler the more positive I became and came to realise that it is nothing like as life changing as I thought it would be. I have gained 2 Kilos in the 5 months I've been on Dialysis. My doc says it's because you absorb some of the glucose in the fluid.
There are also two things you can do to vary the therapy sessions if for example you have to stay up later than your therapy start time. If you're dry during the day you can shorten your therapy time to one less fill but do a last fill. This is what I usually do and then use the first aid room when I get to work and drain into a freeline bag. Or you can do a first fill on the cycler about two hours earlier than you would normally go to bed, disconnect from the machine but don't switch it off, let it continue through the dwell time cycle and then reconnect and go to bed just before the first drain is about to kick in. Your therapy time then finishes about 2 hours earlier than normal. This is an example of how you can really be in control.
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."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!!
Melshel
You might get a breach of copyright letter from B.B. King, 'cause he calls his guitar Lucille
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Dear Ken and all........thank you for your wonderful words of encouragement, I really am a person who likes to control what is happening to me, it seems to be most troublesome in the unit to have "others" control my situation/and without telling me exactly what they are doing! The countdown for catheter placement is drawing near.....FEB 1st!
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Nan
Are you having general or local anesthetic. I know people who've had local and although it was'nt painful they have all said that they could sort of feel what was going on and it was a bit unpleasant and wished they'd been put under full general anaesthetic so that's what I opted for.
Best of Luck and don't worry you'll do fine.
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Shay, I turned the lights down and it's GREAT! My bedroom is no longer lit up like a prison yard. I turned the beep down as well, it was so loud it made me jump out of bed when it went off. Now it just wakes me up and I can move to shut off the alarm.
It drives me crazy that my dialysis center said I shouldn't turn the lights or the sound down. They don't have to sleep with the darn thing, I do. I'd like them to try taking a cycler home and sleeping with it for a week or two, then they might be more sympathetic about the issue!
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Mallory, I'm glad it helped! My dialysis center never told me whether to leave the lights and all or not. I was just reading through the handbook one day and found how to do it.