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Author Topic: i just have to ask you NxStage users  (Read 7109 times)
boswife
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us and fam easter 2013

« on: December 31, 2010, 08:19:35 PM »

I am really proud to say im feeling pretty good or confident about our training, but.....................  i fear the more i read the 'book' (users manuel) the more i say......yikes, can all that really happen.  So, to get to the question i need to ask ... How many of those alarms do you really get, and how smooth does the 'fixing' really go.  In training, we have not incountered any alarms that we created so it seems that thats the way it basacally would go but i just read how much could happen and worry. Our trainer has intentionally caused alarms to train us and practice, so it  "seems" that since she had to 'intentionally' cause them that basically, tx's run smooth and it's not a panic session each day????   Yep, im a worry wart, and just need some reasurance that we're going to be  Okay...
 
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
jbeany
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« Reply #1 on: December 31, 2010, 08:31:37 PM »

No, you won't end up in a panic every day, I promise!  Most of the time, it all goes smoothly.  There are a thousand possible alarms, but they don't all happen at once.  Really, the worst that can happen in terms of the patient's health during a run is that it gets shut down completely and for some reason you can't manually return the blood.  Even that just means you've lost a cup of blood.  Not thrilling, especially if you are already anemic, but not something to panic about.  Mostly when there is a problem, it's more annoyance than panic.  The closest I ever came to panicking, I wasn't even hooked up - there was a serious leak, and most of the batch in the pure flow was on the floor instead of in the tub.

 If something goes wrong, just take a deep breath, note the time so you know how long it's been that the blood hasn't been pumping, and work through the problem.  There's always the 24 hour help line, too.  The other advantage to home hemo is that if it all goes wrong one day, you just start over the next.  Missing a session stops being a huge cause for concern.

You can do this!
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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.

vcarmody
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« Reply #2 on: January 01, 2011, 03:20:04 AM »

I felt the same way, and when my husband and I first came home I had that book right by my side all the time.  Now it is almost a year later and it only comes out when we have an alarm, which is rare.  Most alarms I know and they are usually pressure alarms, any other ones I get the book out and read through them.  If we have a bad alarm day we return his blood and start again tomorrow, and this has only happened a hand full of times. 
My only tip to you would be, to be prepared for a power outage.  When I trained they never went over this.  To have the power go out (especially when your at home and a newbie like I was) trying to find how to manually return blood in the book in the dark is pure panic! There are steps I keep pined up right next to the machine on the wall, like the steps for a manual rinse back. 
I'm glad to hear your not having many alarms while training, same thing happened during our training and when we finally came home I was so nervous because we only practiced alarms but I never really got to do them for real.  My first few alarms sent my heart a racing but I managed them no problem.  The couple that trained before us had nothing but alarms and were so stressed out by them in the end they gave up. 
You will do great, just relax.  When ever I had question  :sos; I jumped on here and asked away.  First time I called Nxstage they were surprised we had been home for over 6 months with never a call to them.  Thanks to IHD and all the very experienced Nxstage-ers on here!!
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Caregiver to husband Chris, NxStage 11-2009
jbeany
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« Reply #3 on: January 01, 2011, 09:20:53 AM »

Yes, two large flashlights are good additions to your home medical supplies!  One for the patient, to use for reading directions, and one for partner, to use to check the machine.
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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.

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« Reply #4 on: January 01, 2011, 12:34:56 PM »

Two flashlights!  :thumbup;

Great idea. I only have one flashlight in my emergency kit!
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Wife to Carl, who has PKD.
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M3Riddler
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« Reply #5 on: January 01, 2011, 02:06:03 PM »

I am really proud to say im feeling pretty good or confident about our training, but.....................  i fear the more i read the 'book' (users manuel) the more i say......yikes, can all that really happen.  So, to get to the question i need to ask ... How many of those alarms do you really get, and how smooth does the 'fixing' really go.  In training, we have not incountered any alarms that we created so it seems that thats the way it basacally would go but i just read how much could happen and worry. Our trainer has intentionally caused alarms to train us and practice, so it  "seems" that since she had to 'intentionally' cause them that basically, tx's run smooth and it's not a panic session each day????   Yep, im a worry wart, and just need some reasurance that we're going to be  Okay...
 

BosWife,

Never give up your guard. After months and months of treatments, you may think you have mastered the machine. Dont let yourself become too complacement as this is when something may happen. Even for us veterans, when that alarm sounds, we sometimes feel the same way when it alarmed during training and we get very nervous.
Review the alarms every so often. Perhaps, bookmark the most common so you can get to them easily....

///M3R
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boswife
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us and fam easter 2013

« Reply #6 on: January 01, 2011, 06:08:24 PM »

Thank you so much you amazing people...  Your encouragement is what keeps me going..  It's not that it all seems to hard, just so extreamly important and my mind just goes of on the 'what if's'.. Thanks again..   :thx;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Zog
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« Reply #7 on: January 02, 2011, 03:23:39 PM »

We hardly ever get any alarms and most of the ones we get are because we forgot to unclamp something when starting.  The worst alarm for us or the most dreaded is the red 30 venous pressure too high alarm.  If we ever start to get those it usually means Jenn's access is blocked internally and will require intervention or surgery. 

The most annoying alarm is a 400+ machine error code alarm during prime.  Don't waste time trying to trouble shoot this one.  Demand a new machine sent immediately.

The most common false alarm we get is the venous pressure increasing/decreasing when giving a bolus or starting the treatment.  The machine will sometimes interpret the change in fluid from saline to blood as a pressure problem.

We keep a handy dandy chart I made of the alarms on the wall.  It basically just says what the alarm number means in plain English.  https://spreadsheets.google.com/ccc?key=0AiEa8NMba3u9dG05YTl4VkF0LS1vZmdpRFZuWElKMlE&hl=en  It isn't a substitute for the book, but flipping pages wastes time.  Most alarms can be fixed by pressing mute, fixing a kink or access problem and pressing the green button.  Many yellow alarms can be noted, muted and ignored.  Don't ignore a red alarm.  If you don't want to make a chart at least photocopy the pages out of the book and tape them to the wall or staple them and leave them next to the machine.

Worst case scenario, as long as blood isn't leaking, just do a manual rinseback and call it a day (or night).  If blood is leaking, clamp and disconnect ASAP!

One of my biggest issues with the machines is the lack of a real Stop and do rinseback now button.  If the machine is trying to do an air recovery or recalibrate the balance chambers it won't let you stop by pressing the stop button.  Maybe there is a good reason for this, but we have had to argue with the machine for 30 seconds to a minute before because it didn't want to stop or it would stop and alarm without the rinseback option.






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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
boswife
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us and fam easter 2013

« Reply #8 on: January 02, 2011, 04:03:51 PM »

oh Zog, i loved (and printed )  your post AND chart..These things are so encouraging and im so grateful for all i get.  Im amazed that this training is kicking up my own anxiety issue so bad.  It's something that i want to do, not am forced to do, and i love learning, so i just dont get it/me.  But, with these encouragements, i tell ya, it sets me back on a good path of 'can do' so i thank you once again...
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #9 on: January 02, 2011, 08:56:26 PM »

I dont get many alarms either.....    maybe one or two a week  but not many..... 
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
molldw
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« Reply #10 on: February 15, 2011, 11:56:49 PM »

We don't really get too many alarms.  Usually my needle just needs to be adjusted a bit.  No big deal.  A couple of times we couldn't figure out what the problem was, called the nxstage support number and they were fantastic.
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homepartnerctl
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« Reply #11 on: March 15, 2011, 05:22:19 PM »

Is anyone else finding the red/yellow/green buttons on the NX Stage panel are cracking over time? The nurse says my touch is probably too hard but I have found over 2 &1/2 years it takes a real touch to set and reset. Any ideas?
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willowtreewren
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« Reply #12 on: March 15, 2011, 05:59:27 PM »

The buttons on our first machine cracked. I read somewhere that the chlorox wipes would cause them to get brittle. BUT the next tow machines we had were made with a different surface on the buttons. Never any problems with them.

 :2thumbsup;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Zog
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« Reply #13 on: March 16, 2011, 08:52:38 AM »

Our buttons on our machine that we have had for 3 years are starting to crack a little.  Nothing all the way through.  I wish the machine had old fashioned dials and gauges on it sometimes, as the buttons are hard to push at certain angles and the scrolling/toggle LED display makes it where you can't see all the numbers at once.  I would say it would be nice if it had a touchscreen LCD on it, but we tend to crack those.  We have a pile of cracked LCD calculators, cameras, laptops and GPS devices.

I'm curious about the new surface.  All of the NxStage machines are a little different.  They have different numbers and locations of cooling fans and some aren't very compatible with the IV pole bracket.  We went though about 3 machines in 2008.  Every one of them had its own quirk.  Maybe they are more standardized now, however I think they tend to upgrade them and economize them as time goes on.
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My wife is JDHartzog. In 1994 she lost her kidneys to complications from congenital VUR.
1994 Hydronephrosis, Double Nephrectomy, PD
1994 1st Transplant
1996 PD
1997 2nd Transplant
1999 In Center Hemo
2004 3rd Transplant
2007 Home Hemo with NxStage
2008 Gave birth to our daughter (the first NxStage baby?)
M3Riddler
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« Reply #14 on: March 19, 2011, 06:05:43 PM »

Our buttons on our machine that we have had for 3 years are starting to crack a little.  Nothing all the way through.  I wish the machine had old fashioned dials and gauges on it sometimes, as the buttons are hard to push at certain angles and the scrolling/toggle LED display makes it where you can't see all the numbers at once.  I would say it would be nice if it had a touchscreen LCD on it, but we tend to crack those.  We have a pile of cracked LCD calculators, cameras, laptops and GPS devices.

I'm curious about the new surface.  All of the NxStage machines are a little different.  They have different numbers and locations of cooling fans and some aren't very compatible with the IV pole bracket.  We went though about 3 machines in 2008.  Every one of them had its own quirk.  Maybe they are more standardized now, however I think they tend to upgrade them and economize them as time goes on.

Zog,

the buttons where actually desiigned the way they are for a reason. They want the buttons to take a little effort to push in to prevent a mistake and make someone think of what they are doing.
I realize that some with arthritis, it may be hard to push. But they were manufactured this way with a reason behind it.

///M3R
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Peritoneal - 13 years
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3 Transplants
Admin of Dialysis Discussion Uncensored on Facebook  
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