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Author Topic: I've Got a Cycler! It's GREAT!  (Read 9597 times)
Nan
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« Reply #25 on: January 18, 2007, 11:06:14 AM »

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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No matter how your heart is grieving....as long as you keep believing, the dream that you wish will come true!
Diagnosed with PKD in 1994
Started HEMO dialysis June 2006
Started Home Dialysis on cycler February 2007
Had Live donor transplant February 2008
mallory
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« Reply #26 on: January 18, 2007, 11:30:05 AM »

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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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
                                  - Jerry Garcia
shay_pcb
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« Reply #27 on: January 18, 2007, 01:28:36 PM »

Mallory, please let me know if you get it figured out, okay?
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Wattle
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« Reply #28 on: January 18, 2007, 05:06:51 PM »

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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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Nan
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« Reply #29 on: January 18, 2007, 07:32:24 PM »

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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No matter how your heart is grieving....as long as you keep believing, the dream that you wish will come true!
Diagnosed with PKD in 1994
Started HEMO dialysis June 2006
Started Home Dialysis on cycler February 2007
Had Live donor transplant February 2008
shay_pcb
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« Reply #30 on: January 18, 2007, 08:29:32 PM »

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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mallory
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« Reply #31 on: January 19, 2007, 08:37:55 AM »

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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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
                                  - Jerry Garcia
angela515
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i am awesome.

« Reply #32 on: January 19, 2007, 08:49:39 AM »

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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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #33 on: January 19, 2007, 08:56:02 AM »

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
« Last Edit: January 21, 2007, 08:24:15 AM by Ken Shelmerdine » Logged

Ken
melshell
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« Reply #34 on: January 19, 2007, 03:22:03 PM »

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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shay_pcb
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« Reply #35 on: January 19, 2007, 06:22:49 PM »

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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Ohio Buckeye
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« Reply #36 on: January 19, 2007, 07:40:08 PM »

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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If I must do this to live, I must strive to live
while I am doing this.
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #37 on: January 21, 2007, 08:55:24 AM »

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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Ken
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #38 on: January 21, 2007, 09:10:02 AM »

."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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Ken
Nan
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« Reply #39 on: January 21, 2007, 09:15:05 AM »

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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No matter how your heart is grieving....as long as you keep believing, the dream that you wish will come true!
Diagnosed with PKD in 1994
Started HEMO dialysis June 2006
Started Home Dialysis on cycler February 2007
Had Live donor transplant February 2008
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!

« Reply #40 on: January 21, 2007, 12:10:09 PM »

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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Ken
mallory
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« Reply #41 on: January 22, 2007, 11:14:42 AM »

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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Sometimes the light’s all shinin’ on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it’s been.
                                  - Jerry Garcia
shay_pcb
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« Reply #42 on: January 22, 2007, 01:31:01 PM »

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.
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