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Author Topic: Alright... I just got my first month of CCPD supplies...  (Read 17520 times)
HouseOfDialysis
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« on: April 27, 2011, 03:24:55 PM »

The cycler is coming tomorrow morning for my home visit to make sure I know how to hook it up and all that fun jazz. Then, tomorrow night... I try it out. Here's to hoping all goes well. I now have 60 cases of stuff in my bedroom. Wow.
« Last Edit: April 27, 2011, 03:47:36 PM by HouseOfDialysis » Logged

Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
Rerun
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« Reply #1 on: April 27, 2011, 03:29:00 PM »

When is the new singlewide trailer coming to park by your garage to hold all this stuff! ?

            :rofl;
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jeannea
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« Reply #2 on: April 27, 2011, 03:36:01 PM »

Isn't it fun having a warehouse? My mom keeps asking me how I can stand looking at it (which isn't helpful). You'll get used to it and soon setting up your machine will be second nature.
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HouseOfDialysis
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« Reply #3 on: April 27, 2011, 03:48:42 PM »

I'm going to organize everything by frequency and even make a nightly kit and only have that equipment in the room besides the solution. Everything else, gets moved to the office.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
jeannea
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« Reply #4 on: April 27, 2011, 06:42:04 PM »

Make sure to keep extra flex caps, mini caps, and masks beside the bed. I also find it handy to have baby wipes. Plus of course whatever keeps you entertained if you can't sleep. I was so nervous the first night on my own I barely slept.
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HouseOfDialysis
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« Reply #5 on: April 27, 2011, 06:46:50 PM »

Flex caps?
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
cath-hater
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« Reply #6 on: April 27, 2011, 08:38:31 PM »

Im not a Baxter patient but I think those "flexicaps" are those caps that allow you to disconnect in between exchanges. Correct me if I"m wrong - anybody.
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Currently on PD using Fresenius.
PD for 9 years.
1 failed transplant in 2010 due to FSGS - donor kidney still inside and still producing urine (weird), but spilling alot of protein.
Off all immunosuppressants.
Currently not active on any list (by choice).
paul.karen
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« Reply #7 on: April 28, 2011, 04:33:26 AM »

Yes Cath hater that is what they are.  If you want to disconnect after a fill to just do whatever you put a mini-cap on your patient hookup and a flex-cap on the patient line coming off the machine.
Just make sure you rehook before the drain starts to kickin.
They may not have sent you flex caps.  If you think you might like to unhook during treatments on your next order from baxter ask for flex-caps.  Also you can get pateint extension lines so you can add an additional 8-10 feet of line to your setup.  This can make the defence of maybe being able to reach a bathroom closeby??
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
peleroja
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« Reply #8 on: April 28, 2011, 07:46:44 AM »

I remember that first month.  Now that I'm off PD permanently (sigh), Baxter took back all their supplies, and I'm planning on moving my small couch in here so I can watch Netflix on my computer in comfort.  Not to worry, you'll do just fine.  Even after 7 years I sometimes wondered what step came next!
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HouseOfDialysis
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« Reply #9 on: April 29, 2011, 11:28:20 AM »

Last night went well excluding one WICKEDLY intense "cramp" in my right middle torso about 10:30pm. It woke me up like a shot. After three minutes, I wanted to just yank the tube out of me and damn the consequences. It may have just been a one-off thing. I thought it was drain related, but the other four drains didn't wake me up at all.

I had two alarms. One for low drain volume, another for fill not complete. I had a Lost Dwell Time of 1 hour 51 minutes and an average dwell of 52. The dwell time set by the script was 75 minutes.

Overall, it went fine. Drained out my last fill at 7am when I got to work and went about my way. Still a smarting pain in my torso, same spot from last night's rude wake up call. But I think we can work this out and it may just be my body assimilating.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
paul.karen
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« Reply #10 on: April 29, 2011, 11:56:29 AM »

That sharp pain could be the inner cath sucking up agasint your innards which can cause a little brusing thus continued pain for a day or two.

Sometimes when i drain it just keeps trying to get fluid out that isn't in there.  Or it gets a little painful more so then drain pain form when i started.  When this happens unless on the last drain (im dry during the day) i will just hit the bypass button.  Also sometimes the bags dont have the full amount of solution and sometimes my alarm will go off saying check lines not done filling or something to that effect.  If bags are empty i will hit bypass to shut machine up.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
HouseOfDialysis
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« Reply #11 on: April 29, 2011, 02:21:51 PM »

The pain at 10:30pm woke me up like a shot and I would had given every cd I had away just to make it stop. Intense doesn't even describe it. I'm glad it was just once, though.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
CHeatherS
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« Reply #12 on: April 30, 2011, 10:23:06 AM »

Oh dear, not sure I should have read this.  I start on the cycler tonight.  I brought it home last night, but husband fell asleep and I could not carry it upstairs myself, so just did manual and went to bed.  I had a LOT of pain after the catheter surgery, and it felt like they left a screwdriver in my abdomen that stabbed into my bladder.  Once there was fluid finally in my peritoneal, then the pain went away, but I am a little worried that I might have those issues in the night too....  we shall see.  Wish me luck.  I do look forward to having my days free.  This is getting so old.  gah. 

Blessings to you, I like your attitude.
Heather
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HouseOfDialysis
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« Reply #13 on: April 30, 2011, 02:30:19 PM »

Don't fret about it. Last night's went much better. I had a little pain during the first drain after fill, but that was it. I think the pain will subside  in time, which is fine by me.

Blood pressure is a little lower today as well. I'm running two 2.5s and one 1.5 tonight.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
jeannea
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« Reply #14 on: April 30, 2011, 05:16:59 PM »

Most of the time you shouldn't have pain. But drain pain is a reality they don't mention in training. Glad to hear things are getting better for you. BTW: there are studies that swearing relieves pain. Go for it when the drain pain hits.
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HouseOfDialysis
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« Reply #15 on: May 01, 2011, 04:21:46 AM »

Only pulled about 500 in UF last night. First night was 1125, two nights ago, 725, now 500. Wtf?
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
billybags
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« Reply #16 on: May 01, 2011, 04:24:49 AM »

HouseOfDialysis, don't worry about it., It does fluctuate all the time. Last night my husbands was 59 and we thought WTF. Some times it is 300,500,  who knows why.
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HouseOfDialysis
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« Reply #17 on: May 01, 2011, 04:33:23 AM »

I can pull 2000 manually everyday, so I'm just a little confused at the moment.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
Kong
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« Reply #18 on: May 01, 2011, 07:58:36 AM »

HD, I have only been doing PD for about three weeks so I am no authority on this. I usually wake up before my final drain and am up out of bed so my total UF is normally around 1400 but if I sleep in it is below 1000. I'm guessing it has something to do with gravity and how you are laying while it is draining. On the cycler when you get to total UF hit enter and then you can go through each cycle to see how much was drained.
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CHeatherS
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« Reply #19 on: May 01, 2011, 10:07:37 AM »

Well, other than two alarms and a LOT of noise from that machine, therefore not much sleep, my body was comfortable.  So I have made it through the first night, and feel like I can do it.  Gosh, the NOISE that thing makes though. 
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Kong
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« Reply #20 on: May 01, 2011, 11:09:32 AM »

You'll get used to it Heather. I didn't sleep well the first week. I still get the alarms but most of the time it is because I wrapped myself up in the patient line while sleeping and it can't drain.
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« Reply #21 on: May 01, 2011, 12:09:18 PM »

Only pulled about 500 in UF last night. First night was 1125, two nights ago, 725, now 500. Wtf?
I hope that tonight makes up for it.
Well, other than two alarms and a LOT of noise from that machine, therefore not much sleep, my body was comfortable.  So I have made it through the first night, and feel like I can do it.  Gosh, the NOISE that thing makes though. 
Yay!  When my Blokey was on PD I wore earplugs ... I could still hear the alarms (of which there were many; he had a lot of problems *sigh*), but not the continue glurgling. You will get used to the noise.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
HouseOfDialysis
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« Reply #22 on: May 01, 2011, 02:56:50 PM »

Last night was the third night and I don't even notice the machine anymore, sound wise, PLUS there was NO pain whatsoever... Besides me stubbing my toe, which was unrelated to the machine. D'oh!

But the UF rate still has me perplexed.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
jeannea
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« Reply #23 on: May 01, 2011, 06:14:49 PM »

I can never figure out why my UF is higher or lower or my weight is higher or lower. I move a lot in my sleep which may affect it. But apparently the biggest issue is your level of constipation. Even if you don't think you are, you could be enough to affect dialysis. As long as your UF is positive and your weight is reasonably close to what it should be you're doing great. Not every night will be perfect but that's the beauty of doing PD every night. It all evens out in the end.

If you already can sleep through it I think you're doing good.
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HouseOfDialysis
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« Reply #24 on: May 02, 2011, 02:56:15 AM »

This morning's UF -930. YUP. NEGATIVE 930. WTF?
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
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