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Author Topic: I may have to switch from NxStage to CAPD  (Read 3670 times)
Adam_W
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« on: January 23, 2008, 08:29:26 AM »

As many of you know, I've been having trouble getting a permanent hemo access almost since I started dialysis a year ago. I had a fistula placed in my right upper-arm a week ago, but I don't know if it will develop. If it doesn't, I may look into switching from NxStage to CAPD, which my centre has just started to offer. I know the basic mechanics of CAPD, but there is still so much about it I don't know. How is extra fluid removed accurately so the dialysate doesn't pull too much off or pull to little? On average, how big are the dialysate bags, and about how many of them do you need to store? (Just a rough estimate, as I know it would vary based on your prescription) If I have to switch, I would start out with CAPD, and then when my centre starts offering the cycler, I would switch to CCPD. I hope I don't have to switch, but I'm glad I have PD as an option. If I'm going to have a catheter sticking out of my body for the rest of my life, I just think I'd rather have it in my belly than my chest or neck.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
goofynina
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« Reply #1 on: January 23, 2008, 08:34:12 AM »

HI Adam, sorry your gonna have to switch but i think you may like it, especially once you get on the cycler :)  The amount of fluid and the size of bags is all going to depend on your clearance (they will do all the testing during your training)  The supplies can be overwhelming but you get used to them, just make sure you have a large empty space to store them all in one place  :2thumbsup;  Good luck to you, hope all goes well.  :waving;
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MyssAnne
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« Reply #2 on: January 23, 2008, 08:39:28 AM »

As Nina says, MAKE SURE YOU HAVE storage room!!!  The nurse will set up the machine for you, as to how much will be pulled off.

You DO have the option of moving up to the recommended amount, so that there is not too much discomfort.  I like it, it gives me more
flexibility, you CAN go back and forth from manual to cycler, by the way. So if you wanna go somewhere, it's easier to grab stuff for manual
than the cycler!

The bags are 2.5 liters. You'll be using two bags, to begin with.  As for how many, I like to have 2 weeks worth plus a couple of days for emergencies. You never know!  There are two bags per box for the cycler bags, 5 bags per box for the manuals. That should give you a
start on determining your supply at hand!
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KICKSTART
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« Reply #3 on: January 23, 2008, 08:50:42 AM »

What you use on capd varies , but the doctor starts you on a strength of fluid and adjusts it depending on how much you are pulling off , everything is measured , your weight watched, your bp, and how much extra fluid you drain off. Storage ..you need plenty! I have a monthly delivery and it takes up a bedroom , a pallet full comes by wagon!!! It takes some getting use to doing capd , not because it is difficult but because of how often you have to do it !
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Adam_W
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« Reply #4 on: January 23, 2008, 11:56:22 AM »

I had my appointment with my vascular surgeon today, and as I feared, the week old fistula is clotted, and it can't be saved. I'm going to be talking about CAPD with my nurse, and my surgeon said when we're ready, I can call his office and they will schedule me to have the PD cath put in. I'm going to continue with my catheter on NxStage for now, but it probably won't be long before I turn in my NxStage for PD supplies.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
KT0930
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« Reply #5 on: January 23, 2008, 02:16:24 PM »

On CAPD, the bags are either 2000 or 2500 ml, depending on your prescription. On the cycler, I used two 5000 ml bags each night. Supplies are delivered once per month, and the first shipment is a little bit bigger than most in order to give you a few days of cushion in case they can't get to you due to weather or some other problem. A typical month's supply is about thirty boxes of fluid. With CAPD, the tubing is attached to the bags of fluid. With CCPD, there are about three or four boxes of tubing delivered each month.

My supplies would take up about half of one side of our two-car garage. As long as you have the storage room, I say go for it. You're already used to being in charge of your own health from being on home hemo, and the freedom from in-center is wonderful! Best of luck, Adam. Let us know what the neph and surgeon say.
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"Dialysis ain't for sissies" ~My wonderful husband
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I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
rookiegirl
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« Reply #6 on: January 25, 2008, 08:44:44 PM »

Hi Adam,

I've been on PD since Oct. 2007 and I'm doing CAPD 2 exchanges per day.  2.5% @ night and 7.25% during the day.  As everyone had said, CAPD supplies doesn't take up so much room.  I store my supplies in a small closet under the stairs.  Baxter delivery once a month, approximately about 10-12 boxes which each box contains 6 2000mls of solutions, plus 2 boxes of caps.

Prior to being on CAPD, I was on CCPD for 2 weeks which the supplies were overwhelming.  I know it was a good 30+ boxes.  I was so happy to be on CAPD and got rid of the CCPD supplies.

I hope all goes well with you.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
Ohio Buckeye
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« Reply #7 on: January 26, 2008, 11:14:25 AM »

You may prefer being on CAPD, especially once you get on the cycler.
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MyssAnne
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« Reply #8 on: January 30, 2008, 07:58:58 AM »

Adam?  How is it going with the nxstage right now?  Have you been talking about going on the cycler yet with your nurse?

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

« Reply #9 on: January 30, 2008, 08:43:04 AM »

Just a little tip for when you have the catheter surgery. Go for the full anaesthetic not local. I know someone who had the local anaesthetic and he said that although there was no pain it felt very unpleasant and he wishes he had gone for the full anaesthetic.
Best of Luck
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Ken
Adam_W
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« Reply #10 on: January 30, 2008, 03:08:54 PM »

I talked to my nurse today and got a whole bunch of info on PD. She didn't have much on CCPD, but I got a whole load of stuff on CAPD. I'm still hoping to stay on NxStage, and I'm finding a new surgeon who may consider putting an access in my leg and/or trying to save my graft. If I have to start PD, the info that I received will help a lot. I think I would do really well on PD, especially if I can get the cycler. I'll see how everything goes.

Adam
Logged

-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
xtrememoosetrax
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« Reply #11 on: January 30, 2008, 03:18:28 PM »

I was just thinking about you, Adam, and wondering how things were going for you, so thanks for the update. I'm wishing you the best as this all continues to unfold for you.
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KT0930
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« Reply #12 on: January 30, 2008, 03:51:51 PM »

Thanks for the update, Adam. If NxStage is what you would rather do, then I certainly hope that the surgeon can accomodate you and keep you doing what you're comfortable with. Best of luck, either way, and please keep us up-to-date on what's going on.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
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