new to nxstage and having some trouble, Help!

[jshabanian]

Okay, after about 4 weeks of training I am finally on my own this week at home.  Everyday we have had some troubles   At first it was when I was coming off the machine.  Small things like clamping arterial before hitting stop.  Now that I am aware we are being very careful not to make that mistake again.  Or forgetting to unclamp the arterial clamp closest to the saline bag when rinsing back.  These both caused air alarms and took us so long to figure out that I didn't feel safe rinsing back so just left the blood in the lines and disconnected. 

Tonight I started cramping so gave myself a saline bolus. All went well until I needed a little more saline and didn't notice that the bag was running low...then empty.  Got red 11 alarms the red 10.  There was so much air in the line.  At first we couldn't figure out where it was coming from, then we noticed the empty saline bag....sucked dry.  Tons of air and air alarms going off constantly.  My poor daughter trying to get all the air out to no avail.  There was simply just too much air to remove in time  With so much air in the line I had to again emergency disconnect and leave the blood in the lines.

It seems like all of you were much better at this than we are.  I thought we were doing well during training but now and losing confidence in our ability to do this ourselves. My daughter is helping me and my husband too.  He is supposed to be my primary helper but our trainer got called away on a business trip the week my husband  took off work to train with me.  He got only about 3 days of training before she left. Then he got called away on a business trip for a week and missed out on the rest of the training at home. 

My husband is a very smart man but does not multi task very well at all.  He gets easily flustered and cannot handle the stress. I hope he gets better at this because I am not confident this will work out.  He is very methodical and likes to think things through before acting.  This works well in his job (software engineer) but does not work very well in the home dialysis setting!

If anyone has any tips or words of advice or encouragement....or even horror stories, I would greatly appreciate any help you can give.

Thanks,
Janet

[amanda100wilson]

It is very easy to make mistakes early on but the easiest way to prevent mistakes is to read the instructions as you do these things and not try to remember how to do it.  That is a sure way to mistakes when you at just learning.  What I suggest that you do, is to get the step by step instructions for disconnect or what ever you are doung and read them ou to your husband, one step at a time while he does what needs to be done.  The other tithing is when you are rinsing back watch the bag as you do it.

In time you will do things by memory but in the early days this worked for us.  Now I do everything on my own and am much more able to troubleshoot when something goes wrong.   You will get there, it just takes time.  By the way, you can't keep wasting blood on a regular basis, as you will drop your Hb ver quickly if you do.

[willowtreewren]

Janet,
I remember well the fear and mistakes we made when we first got home with our machine. I was the care partner for my husband. I would panic every time there was an alarm at first.

Then it reached the point (after a couple months) of "oh d@$n, another alarm. What now?" We kept the manual with the list of alarms handy so we could clear them easily (with less frustration). But I always felt the pressure of getting things fixed in time.

One thing that we did that really helped us, was to make our own check list of setting up and taking off. Going through the directions and re-writing them in our own words helped us understand them better. We put those directions in plastic sheet protectors and kept them handy for every treatment, even years into the process. I also made a list of the most frequent alarms we had (with resolution) and kept that in the front of the manual. I'd whip that out first, to see if an alarm was covered and if not, got into the body of the manual to find the fix.

Those first few months were rather intense, but then it all became rather routine. So routine that we then found ourselves making "careless" errors. 

Keep at it. NxStage was really great for us. It allowed both of us to continue working 10 hours a day. It kept my husband very healthy with no food restrictions. It allowed us to travel whenever we wanted and go camping.

You'll get it.

 

Aleta

[cattlekid]

I did the same things and more when I was first starting.  Heck, I clamped the arterial before pressing stop earlier this week....and I've been doing this for over six months so far! 

I will promise that it will get better.  When we first started, sticking took forever and alarms were always cause for panic.  Now, I've got sticking down to a science and the whole process is getting to be a no-brainer.  Now, I just have to get my dry weight adjusted AGAIN because I'm getting low BP at the end of my treatments.  That's about the biggest problem I have to deal with at this time.

[amanda100wilson]

One other suggestion.  Mynurses got me together together a folder with instructions for set up, monitor treatment and  end of treatment.  That is all that is in there.  Then I have another group for alarms held together with file rings for ease of use.  All are covered by page protectors for obvious reasons.

[boswife]

We all sound very alike in our 'methods' here.  The plastic sleeves, written in our own words etc   It REALLY helps and helps the nerves as you know you can look quickly without a whole bunch of extra stuff written.  When we came home, even though i thought i knew pretty well, i took each step with the book for ........ well quite a long time.  No hurry for me to rid us of the book as its no big deal and no ones testing you on how fast you can do 'without looking'..  Step by step for a while. Thats my suggestion and    Be patient, it'll happen..

[Dannyboy]

Janet,
I don't think your experiences are all that different from what most of us have gone through. (HAH. That's not much comfort I bet)

You do your best to "get trained" and absorb the do's and the don'ts, and the why's and whynot's.   

We've been doing NxStage for about 10 months now, and I can empathize with your experiences.   It will get better.   Like any new technical experience, you will get comfortable with the routine.    It can sure be frustrating to get alarms that turn out to be mistakes in technique, but a person learns from those errors, of course.

Just wanted to say 'hang in there' it will be worth enduring the learning curve.

Best wishes,
---Dan

[jshabanian]

Thank you all for the words of advice.  I think I have been trying to go from memory too much and not using the book.  I will get back to basics and use the book, reading the steps off to my husband and watching as he does them.   He is not good at multi tasking so when things go wrong he panics and becomes useless. This will likely get better when he feels more comfortable with the machine and process.

All of your suggestions were so great and it is good to know that we are not the only ones experiencing these problems early on.

I will keep at it and let you know how it goes.

Thanks again!

With gratitude,
Janet

[jbeany]

Yup, used the book for each and every step for ages!  Don't think you have to have it all memorized.  It's okay - it's an instruction manual, not a cheat sheet!

[chiawana]

Janet, we'll be going "live" here at home next week, and I'm pretty apprehensive about it. Our nurse will be here with us for at least the first couple of days so that will help. She's already warned us that it will all feel very different when we are at home, because everything will be in a different place and we'll have to get our own system worked out. We have a "cheat sheet" with the set-up and take-off instructions condensed on one page. I will definitely be keeping that close by - mainly which clamps to clamp or unclamp, and when.  At first the cheat sheet was TOO condensed, I needed to know in more detail on a few things, so I got out the big book with the real step-by-step, and now I'm fine using the shorter version. I know that once we're here at home I'll have the occasional brain fart and totally skip a step. Our nurse told me that since we'll be doing it in the evenings after I get home it'll be good for me to have those instructions nearby because I'll be tired and less able to focus well. So the sheet will be a big help to get me through after I've worked all day long.

My husband is a pretty good patient and he's relying on me to do a lot, even though he's also learning everything right along with me. It's just that he'll be the one hooked up, so there are some things I will simply have to do. He was so patient this morning when I was digging the scabs off his buttonholes. One of them was really stubborn, but I was going to be darned if I was going to risk infiltration.

I hope your daughter and husband will get into a groove and come up with a system that works for them to do your treatments. Our nurse told us that everyone she's trained has come up with a way that works best for them, and no two are alike. So however you can work it out where everyone feels comfortable and understands what they need to do, it will be unique to your situation.  Keep us posted! 

[lmunchkin]

Oh my, I feel as if Im walking down MEMORY LANE!!!  I know this is serious, but I can't help but laugh, when I read this.  It was so much like my experience too.  Its like CARBBON COPY through out! 

But really, Chia and others here have the right idea.  Just follow the sheet of instructions step by step. If you mess up, call on TECH SUPPORT.  NxStage has the best Tech support.  I havent used them in a long time, but they will walk you through this and will not hang up till you get it solved!!! I relied on them more than the nurse who trained me.  They know this machine inside and out, and as you get to know them, they can tell you of some things that were not in training, but you have to get the basics down first,

Listen, it is not easy at first.  It is alot to take in for sure.  But as I have said many times, eventually it will click!  Once it does, you will become very comfortable with your'e decision making.  Ive been dabbling with this awesome little machine for 2 yrs now, and we just don't have alarms anymore! In fact, it really has become a "Bore" to me, because it has become same ole same ole, not making light of the life it sustains, but the process itself!  Does that make sense?  Not stepping on toes here,  for this disease is NO JOKE! Just the machine's set-up & unhook & breakdown, and over, and over again, has become 2nd nature to me and Ive grown bored with it!  I love it because of John.  It gives us more time together, and that, Iam so very appreciative of.

In time, you guys will be the same way!  I promise!  At least you are at home, and that is where our heart is.

God Bless,
lmunchkin

p.s.  Please, don't forget to rely on Tech Support.  That is what they are paid for and they are wonderful too! They have walked me through many "miles" of alarms, kinks, clamps and no clamps ect..........They truly are great!

[boswife]

just have to jump back on here and second what imunch said about Tech support... They are increadable, freindly, kind, inderstandable, funny,,,,, and just wonderful to have there when you need them.  In fact, i actually missed them when i started not having to call them daily    hehe...  They really are amazing even if you have to call and call and call so USE them!!!  And again, all the best. 

[jshabanian]

The run last night had a few glitches but we were able to overcome them and I did a complete run with ALL my  blood returned to me!!!  YAY for blood back in the body!!

I did have to reposition the arterial needle.  I had the nurse on speaker phone as she walked me through it.  Had to pull needle out till bevel was visible then re-insert.  Did get one spray of blood because I pulled needle too far out but other than that things went well after that.

Got leg cramps in the last half hour so gave myself a bolus of saline.  Clamped wrong side of blood tube and got an air alarm and blood in the saline bag.  Bollux!

Fixed that up and the rest was clear sailing.

We are proud of ourselves for making it through this again.

Thanks to all of you for your help and words of encouragement.

Janet

[amanda100wilson]

You may want to stick a pice of tape near the saline clamp on the arterial side each time so that when you need to give saline, you clamp the right side. By the way, you don't always need to apply a clamp to give saline, you can just open both white clamps and ruin it in.  Clamp if you really need it in a hurry but otherwise just open both white clamps.  It flows on more slowly so not good for a cramp or a dangerous drop in blood pressure.

[jshabanian]

How funny you should  say that Amanda!

Just last night my husband said that from now on we are going to put a piece of tape on the arterial side so we don't make the same mistake again. 

Thanks for that great tip.  I will be starting that tonight.

[chiawana]

Our nurse is letting us do the whole treatment our last few days of training, so today we kept getting a venous alarm. I was noticing the venous pressures seemed awfully high (330-350) but it took it awhile to alarm. I was blaming my husband because he is a real squirmer, and I thought it was him moving around that was affecting it. We got the alarm and I pulled the needle out a bit and restarted, and it alarmed again; the pressures were still too high. He kept telling me it was a clot but I knew it wasn't. I don't know how I knew it, but I just did. Finally ended up gloving up and flipping the needle. We already automatically flip the arterial needle as soon as it's inserted. Something about his buttonholes, the needles just work better flipped. As soon as I did that, the pressures were perfect. Ha! Vindicated! And thrilled that we were able to figure this out without having to go whimpering off to the nurse, lol.

[jshabanian]

Chiwana.

What a great success story!  I put my arterial needle in flipped from the beginning.  That way I don't have to flip it afterward   There are supposedly needles that come without the butterfly on it so they can be easily flipped if needed.

Your words are inspiring.

[amanda100wilson]

There are also needles which have the butterfly wings but the line and needle (since it is attached to it) can be swivelled independently of The wings which stay in place as they are.  Haven't used them but have seen one.

[rocker]

I have to add something on the "panicking" topic.  Hubby's caregiver is also a software engineer, and I used to feel panic too when something went wrong.

Your husband has to convince himself that nothing about this can harm you in a few seconds.  An unclamped needle can make an awful mess in a few seconds - but you're not going to lose much blood. Take those few seconds to assess, evaluate, and form a plan. If it's an alarm and the book is close by (as it always should be), take those seconds to look up the alarm and understand what's happening.  You are not going to clot in a few seconds.

To put it more simply - "Don't just do something, stand there!" (and think)

I used to feel that everything needed to be addressed NOWNOWNOWNOWNOWNOW.  It does not.  Five seconds from now is fine, and you can do a lot of planning in five seconds.  Work that into your calculations, and a lot of the panic goes away.

  - rocker

[jshabanian]

Thanks, Rocker!  I will tell him what you told me. 

Hopefully he will calm down a little.

Janet

[justjen321]

Oh my, those are VERY recent memories for me.

As a caretaker, I can only second what someone above said. Aside from a needle flying out of the vein needing pressure to stop the bleeding, that machine ain't gonna let nothin happen to ya in a minute. Those alarms are scary as hell when you are new to it. I know. I had little mini flutters in my belly each and every time the machine made a SOUND.

I have a suggestion that is slightly different, but may be helpful. It was something I planned to do for myself, and didn't because I didn't get it done before I realized I didn't need it, Buuuuut.

Get a poster board. Write the common alarms on it. (Your nurse can help you. ) Post it directly behind your machine. (Ours is named Vlad, our machine.) It's extremely comforting to glance up and see the alarm and go oh. Yeah. No big deal.

What I DO have is

A. All my books handy enough that I can have my hands on them in 5 seconds.
B. I took the condensed version of alarms, put it into sheet protectors, put a ring on it, and it hangs from the IV pole atop his machine. (We use PureFlow, not bags). It's wonderful to know that in 5 seconds, I'll KNOW what's happening, and have an idea how to fix it.

[justjen321]

And I managed to lose half my response.

Go me!

Anyhow. It WILL get better. Every person in the history of EVER to use NxStage has made a boatload of mistakes. As hard as it is, try to relax. Your life doesn't depend on an individual treatment, and there's always tomorrow.

[JohnJ]

Yup..those first few days and weeks are just like bringing a baby home for the first time. Suddenly you're all alone and you think "Oh shit...now what have I\we done?"

Hang in there...it WILL get better. I was lucky enough to have a medical background from the Army and I still made stupid mistakes. They ARE going to happen...don't let them get you down. Learn from your mistakes and move on. Make NEW mistakes 

And NEVER be afraid to ASK ASK ASK questions. Drive your nurses nuts with questions. That's what they are there for.

[bevvy5]

We don't use NxStage but can only reiterate that it's really just taking a minute (and a breath) and really looking and thinking about what to do, not just starting to push buttons. 

And we've been at home for about six months, I still use the set up checklist religiously every night, just quickly go through to make sure I haven't forgotten anything.  I also go through some of the techniques that we have rarely used to make sure I know where to find them in our troubleshooting guide and taht I have reasonably good idea of what to do as I'm following the instructions in the guide. 

Also, try to look on every "mistake" or "incident" as a "learning opportunity."  After Greg and I go through something, we both kind of look at each other and say, "We'll know next time."  Not sure we'll ever run through every possible alarm/combination but we're a lot better at it than we were!!