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Author Topic: Alright... I just got my first month of CCPD supplies...  (Read 17514 times)
Lillupie
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« Reply #25 on: May 02, 2011, 03:55:51 AM »

Houseof Dialysis,
 If yo uare getting a UF total of -930, you might have fibrin.
 I want to address your other issues of different/fluctrating(sp?) UF totals. The numbers do vary on the machine. It all depends on what you are eating a drinking. The UF total only is how much fluid is removed. THe dwells will remove the toxins. So, if you have a lot of fluid the numbers are higher. If you have not been drinking at all, then the numbers are lower.
 The negative numbers are usually catch your attention. First constipation can be a problem, ask for a stool softner, secondly there might be fibrin that you cant see. So if this is the case you might have to get a bottle of heaprina nd a needle and it in the port on the heater (the bag directly on top of the machine). Check your bp and weight, if both are up, you can use a 2.5 (the green tab bags) with the heaprin. Its hard on the machine to actually see fibrin, But yeah make sure you do something about that high negative UF total or you will get fluid overload
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
HouseOfDialysis
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« Reply #26 on: May 02, 2011, 04:08:08 AM »

I have a last fill at the end of cycle, which I drain out near 9am. There's been no fibrin in there since I started, but I'll load up a 6l bag with heparin and see what comes of it.
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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.
HouseOfDialysis
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« Reply #27 on: May 02, 2011, 06:31:31 AM »

The drain bag from this morning had some flakes in it, but also there was about 3L fluid in there. Much more than the 2L that I filled with. So, there's my -930, I think.
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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 #28 on: May 02, 2011, 09:08:24 AM »

Think "CONSTIPATiON" are you?
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HouseOfDialysis
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« Reply #29 on: May 02, 2011, 09:09:52 AM »

Nope. Everything is quite regular. Twice a day, in fact. No pain or any such things.
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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 #30 on: May 02, 2011, 10:03:53 AM »

Sounds like you found the lost 930, which is good. The line was probably clogged for a moment, either inside or outside.  I doubt if your body had just absorbs all that and the 2L re-absorbed it back out.  Mostly likely a clog in the line.
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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).
jeannea
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« Reply #31 on: May 02, 2011, 12:36:20 PM »

I think a negative UF that big warrants a call to your nurse to discuss things. She needs to know about it.
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HouseOfDialysis
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« Reply #32 on: May 02, 2011, 01:17:56 PM »

I finally weighed the drain bag from 8am. My eyeball estimate only off by 200. It was 3700. I last fill at 2000. No wonder I felt sluggish.
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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 #33 on: May 03, 2011, 02:53:27 AM »

There you go, SORTED
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HouseOfDialysis
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« Reply #34 on: May 03, 2011, 03:34:04 AM »

Lillupie,

I injected heparin into the heater bag and this morning UF was 1382.

Booy-to-the-yah.
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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.
HouseOfDialysis
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« Reply #35 on: May 03, 2011, 02:10:23 PM »

Doing Kt/V on Thursday and it seems I'm getting into the swing of things with CCPD. So, still moving forward and got a tip on a potential living donor, but the Army won't allow him to get tested until after he's discharged next summer.
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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.
*kana*
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« Reply #36 on: May 03, 2011, 06:28:47 PM »

I used to pull off 2000 or more when I was doing manuals.  I pull off 800-1500 per night with 2.5 solutions.  My neph told me that anything over 400 is great.  Less then 400 and things aren't working well. 

Trust me on this one.......You can poo 2 times a day and still be constipated enough to cause drain issues.  I thought there was no way I needed to take stool softeners as long as I was that regular.  I started having lots of drain alarms and then started taking the softeners and reduced them by a whole lot.   
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PD started 09/08
PKD kidneys removed 06/17/09

Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

Hemo 06/2009-08/2009

Liberty Cycler-11/09-5/13
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billybags
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« Reply #37 on: May 04, 2011, 05:50:46 AM »

*kana*, I really agree with you on this issue of constipation. My husband has to take 2 exlacs twice a day, plus 2 spoons of lactose.The nurse always says that if you get low drains and lots of alarms you are constipated.
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Lillupie
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« Reply #38 on: May 06, 2011, 05:52:06 AM »

Lillupie,

I injected heparin into the heater bag and this morning UF was 1382.

Booy-to-the-yah.

Was I right? try using heaprin?
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
HouseOfDialysis
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« Reply #39 on: May 07, 2011, 04:43:05 AM »

It seemed to work out that way, yes!
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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.
HouseOfDialysis
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« Reply #40 on: May 08, 2011, 02:07:37 PM »

I think I'm going to start making videos for future/potential PD patients. What were things you wish you know before hand or what to expect, before you started?
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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 #41 on: May 10, 2011, 11:10:12 AM »

In the UK we do not have access to heparin. We have to go to the unit and a nurse will  inject a fluid bag with it.It may mean 2 or 3 visits to the unit if we have fibre  We can not be trusted.
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HouseOfDialysis
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« Reply #42 on: May 10, 2011, 01:15:21 PM »

What? I've got six vials in my cabinet. Should I send you one?
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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.
Lillupie
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wedding 12-10-11

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« Reply #43 on: May 10, 2011, 03:41:26 PM »

That is insane! Thank God here it is not like that. What if you are on the cycler and you need to put it in your bags on the machine? Do they expect you to carry in a 5 or 6 liter bag?? Im prone to hernias, I cant carry those bags
Lisa

In the UK we do not have access to heparin. We have to go to the unit and a nurse will  inject a fluid bag with it.It may mean 2 or 3 visits to the unit if we have fibre  We can not be trusted.
Logged

Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
HouseOfDialysis
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« Reply #44 on: May 11, 2011, 03:01:25 PM »

I swear I am the dumbest person I know. I had connected myself to the cycler and hit GO for the initial drain and I realized something quite important... When I primed the patient line, I left the clamp CLOSED.  It would have been bad from the word, Pain! But I had the 12 foot extension tube on as well... ALL THAT AIR... That would have been bad. So, I tried to reset the machine, which is impossible once the therapy program has started. So after an hour of futzing with it, I FINALLY called Baxter, had it off and threw out the supplies I had rigged up.

I did four manuals from last night to 2pm today, so I'll jump back on at 8pm tonight...  This time, WISER. As I heard someone say before... NO SHORTCUTS! It causes lapses in judgement like I had last night.
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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.
Lillupie
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wedding 12-10-11

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« Reply #45 on: May 11, 2011, 08:14:53 PM »

Thats right! YOU LEARN From your mistakes! Anytime something dont seem right, your best bet is to start all over.

Lisa
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
cath-hater
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« Reply #46 on: May 11, 2011, 10:13:31 PM »

Been there and done that. Felt like a jack-ass at first, then came the pain. Then I never did it again since.
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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).
HouseOfDialysis
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« Reply #47 on: May 22, 2011, 10:06:35 AM »

Today, I rolled over to record my daily numbers and my UF was 2178. No wonder I felt dehydrated.
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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 #48 on: May 22, 2011, 11:28:26 AM »

HouseOfDialysis, that is a lot of UF. are you drinking too much?  We had to call Baxter's a few weeks back and ended up having to change the whole lot in the middle of the night.We had an air lock in the set. What a pain in the ar*e it was.
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Alisa
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« Reply #49 on: May 23, 2011, 12:40:40 AM »

I think dehydration occurs differently for everyone.  I fill with 2800ml volume.  On the cycler for 10 hours a night, It works out to a total of 6 exchanges a night.  My uf is usually around 2800-3500mls depending on my % used.  I also use a solution called physioneal, which is basically the same as traditional dianeal except that it has bicarb in it to neutralize the acidity of the sugar, which is then easier and less irritating for your peritoneum.

Houseofdialysis,,, about your idea for some pd videos, I think it is a fab idea.  I have a lot of ideas as I have been doing this for over 5 years and have experience hundreds of different situations.  Let me know if you need any ideas or suggestions or tricks of the trade so to speak.  Would love to help out.
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PD since 2005
Waiting for transplant
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