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Author Topic: Otto's going to try Nxstage  (Read 43862 times)
jbeany
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« Reply #150 on: August 18, 2008, 07:12:54 PM »

Hooray!   :cheer:
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

pelagia
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« Reply #151 on: August 18, 2008, 07:35:44 PM »


Goooo OTTO Go :cheer:

:yahoo; :yahoo; :yahoo;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
cherpep
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« Reply #152 on: August 18, 2008, 07:41:04 PM »

Congrats to both of you.  So glad things are going well.  It only gets easier.
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lola
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« Reply #153 on: August 25, 2008, 02:55:43 PM »

Today was a BAD day. Otto could not get his blunts in, so he skipped :boxing; They are pissed and said if he can't get it tomorrow they are coming out. His trainer called me because she could tell how upset he was and didn't want to push him to hard, but explained that he can't go 4 days without D.
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pelagia
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« Reply #154 on: August 25, 2008, 05:17:31 PM »

Sometimes there are days when nothing seems to go right.  And then everything clicks.  I hope tomorrow is better for Otto and for you, Lola.  :cuddle; 
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
G-Ma
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« Reply #155 on: August 25, 2008, 06:21:17 PM »

Oh Lord...I hope it works tomorrow...I sometimes think I'm years away from blunts...my venous vein keeps rolling so never the same place twice although I'm getting it better than the arterial..I think too many bends down there.  Hang in there you guys along with me.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
silverhead
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« Reply #156 on: August 25, 2008, 07:06:59 PM »

After Sharon has a day off I automatically grab the sharp needles, it is very difficult to get blunts in, after that blunts work fine.......
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jbeany
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« Reply #157 on: August 25, 2008, 07:13:48 PM »

Didn't they give you sharps as well?  If they didn't think to do that, it's their own stupidity causing the problem!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

okarol
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« Reply #158 on: August 25, 2008, 09:22:09 PM »

Didn't they give you sharps as well?  If they didn't think to do that, it's their own stupidity causing the problem!

I was wondering the same thing. It makes sense to have sharps if needed.
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charee
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« Reply #159 on: August 25, 2008, 10:03:15 PM »

Didn't they give you sharps as well?  If they didn't think to do that, it's their own stupidity causing the problem!

I was wondering the same thing. It makes sense to have sharps if needed.
we were send home with no sharps, we sometimes have to use a couple of blunts but we finally get it in
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lola
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« Reply #160 on: August 26, 2008, 05:30:38 AM »

Yes he has sharps. He got the blunt in but no flash back, his arm is buzzing away so he will try again today and if he can't get it then they will come out. Otto thinks since he feels fine it's no big deal to miss :Kit n Stik;
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lola
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« Reply #161 on: August 26, 2008, 09:02:24 AM »

He's on :bandance; After trying with blunts he had to break down and use sharps
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Wallyz
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« Reply #162 on: August 26, 2008, 12:57:11 PM »

Yeah, after  a day off I have to use sharps sometimes.  Keep it up, the buttonholes get easier to use.
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cherpep
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« Reply #163 on: August 26, 2008, 02:50:17 PM »

My buttonholes never took, I tried for months, always in the same place.  The fistula didn't roll or anything, but I'd push & push & push, but the blunts just wouldn't break through.  The nurse also could not get them to work.  I always had to use sharps.
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lola
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« Reply #164 on: August 26, 2008, 04:24:49 PM »

Otto's been using blunts since the 1st week of training and this is the first time he had to use a sharp ???
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G-Ma
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« Reply #165 on: August 26, 2008, 06:15:50 PM »

Mine is not seeming to work either...we must be fast healers cherpep???  :rofl;  skin that is.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
lola
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« Reply #166 on: August 28, 2008, 08:19:29 AM »

We lost power last night as Otto was making a new batch, now he has to use the bags Thank God I made him order more "just" in case. I'm noticing his hair is REALLY thinning is this normal?
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lola
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« Reply #167 on: September 01, 2008, 06:03:10 AM »

Otto's first Dr appt since starting home-hemo went well. One thing they did was cut his cellcept in half and next month they may stop it all together, it's weird seeing drugs he's been on forever go away. They also upped his Foslow(sp?) They can't figure out why after all this time of his blunts working that now he has to go to sharps, and let me tell you Otto is one unhappy little boy about that. The rest of his labs still are looking good although they may also add IV iron even though his Hemoglobin is the highest it's been in 2 years(12.8) something else to do with it is to low.  :cheer: :cheer:
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lola
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« Reply #168 on: September 01, 2008, 09:20:28 AM »

I forgot to ask how often do you put bleach down your drain? I was told we'd know because of the smell, well last week went into do laundry(we have lines running down there) and about :puke; from the smell poured a whole bottle and smell went away, well just went to do laundry and again :puke; Otto is running now so does it just smell because he's on? or do we need to pore bleach more often?


EDITED: Fixed smiley error - okarol, admin
« Last Edit: September 01, 2008, 05:35:01 PM by okarol » Logged

G-Ma
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« Reply #169 on: September 01, 2008, 09:53:11 AM »

I was told to pour bleach once a week for sure just to keep the line clear.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
RobinM
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« Reply #170 on: September 01, 2008, 11:50:23 AM »



Are you guys talking about the waste/drain line or the kitchen/bath drain?  No one told me to pour bleach down anything.  We've never noticed a smell.  I'm using bags, though.  Would that make a difference?

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silverhead
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« Reply #171 on: September 01, 2008, 05:23:57 PM »

Sounds like your drain goes into an open "p-trap" (like your washing machine goes into), it will leave an amount of drain fluid in the trap open to the air, you can pour about a cup of water into the trap after treatment to help clear it.  What I did was install the NxStage provided clamp  to the drain pipe under Sharon's bathroom sink (it is below the P-Trap) clamp goes around the pipe, drill a hole through the opening in the clamp and insert the drain line, no more smells......
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funnygarcia
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« Reply #172 on: September 02, 2008, 10:28:03 AM »

Our center gave us used everything.. including that horrid black hose / drain line. Nurse told us we could use drainline extensions and the black hose only needs to be in drain when you are draining a sak.. WRONG  :urcrazy;


When we make batch it oozes out a bit during conductivity phase .... we figured it out the hard way when I smelled this awful "something gone bad" stink behind the machine where the hose was curled up. It had leaked on the carpet.    :puke;

We used a big cup of bleach water and squished it into the control unit drain .. 30 cc at a time.. followed by water. Ran a bleach wipe all down the tubing when reeling it up again and on the end of the hose put a blue pad/chux before putting the whole works in a garbage bag.

No more stinkiness  :2thumbsup;

We live in an apt, water from bathroom sink (reel it up when done) and drain into tub.
The black hose diameter is too large to allow the bathroom door to close. We put up with it every two days to make a new sak only.

I wish the NxStage could have been slightly more house/personal use friendly.

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jbeany
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« Reply #173 on: September 02, 2008, 10:38:36 AM »

If you think about it - Otto's essentially peeing down that drain every time he uses it.  You might want to pour a half cup of bleach down it every time, or at least every other.  The fluid that drain reeks like rotten flesh - it's nasty!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

lola
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« Reply #174 on: September 28, 2008, 04:39:45 PM »

 :banghead; Otto and Wall-E have not been playing nice all week, one code after another now Otto's making a batch and once again it's a new code every 5 minutes. Otto called Nxstage so he's starting from step one and said maybe Wall-e wants to retire early because he's thinking he wants to also.  :Kit n Stik;
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