Hoooly Coow - Here we go again!

[Gerald Lively]

NxStage –

Having spent the day reading posts about NxStage, the hook-ups and alarms, I am now among those who have had the crap scared out of them.  To begin; the nurse who does the training here knew nothing about the fresh water connections.  And I do wonder if she drinks water at all. She brought out an arm load of fittings to show me how it was supposed to work but could not explain how they fit on the end of any type of faucet. I examined each devise and none made any sense.  So, I asked if I could simply plumb a fresh water line directly to the NxStage equipment, she didn’t know.  I am assuming I can so long as I use a shut-off valve near the dialysis unit.

Said nurse is spooked about our well water supply but will test it later on.  She may even drink some. She says the reverse osmosis in the dialysis machine will have trouble processing water that is run through a water softener, and she has some notion that any water from a well and is also untreated, is suspect.  Without a doubt she is a city-fied American who is partly germaphobic.  I knew a lady once upon a time, who grew very nervous when she was in the country-side, especially when she could see cows. She was absolutely phobic about it.   I offered to take her to a dairy farm where she could Hand-milk a cow and she went into convulsions.

This doesn’t jib with my experience on reverse-osmosis equipment – when used on sailboats.  These units are meant to produce drinking water from ocean water. The membranes do require frequent flushing but this procedure is simply done.  Is this different on dialysis equipment? I am considering the installation of my own reverse-osmosis unit to treat the water before it gets into the dialysis machine just to keep our nurse from getting goose bumps.

Then there are these many alarms; I anticipate that I will be hooked up when any alarms begins blurping an alarm.  (Blurping is hi-tech terminology) Okay – flashing – feel better now?  Where was I before you interrupted?  Oh, I will be strapped in to this dialysis unit similar to my experience at the dialysis center, so who and how does one deal with alarms, leaking pucky water and other onerous malfunctions that we shall not mention?  Huh?  Who?  My spouse is good at mechanical things but is a deer caught in the headlights when it comes to an emergency.  Must I save myself?  Ha!  I shall rip off my jammy tops and reveal my Superman chest and fly to my own rescue?

I suppose these and many questions I have will be answered during training – which will commence in about six weeks assuming I don’t croak before then. I really am thinking that I will plumb the water supply and sewer discharge directly to this machine – NxStage.  Comments?  Drip pan under NxStage?  Sounds like an old-time Harley which also required a drip pan.

[cattlekid]

Hmmm....let me try to tackle some of your comments. 

As far as the water, I think it's a bunch of hooey.  We have city water and failed one of the levels with the water taken out of our faucet, which we pay big bucks for to ensure is of the "highest quality".  Yeah right.  But the water out of the PureFlow (the machine that is used with the NxStage cycler to create the dialysate) passed the testing once it ran through the PureFlow filters.  Even *if* your water didn't pass testing, you can always use the dialysate bags.  They are pre-mixed and you hang the bags from the machine each time you do a treatment.  It's a lot more boxes to deal with, but if you have the space you seem to have based on your past posts, then I think it would be a non-issue.

Secondly as far as emergencies.  You would be surprised what our spouses are capable of doing.  My husband is not one that wants to come anywhere near me when I am sticking myself with great honking needles.  But on Monday night, when I had to pull myself off of the machine in a dire emergency (something bad was going on in the intestinal region), he was quite calm and collected.  More calm and collected than I was.  He also didn't mind that my bathroom looked like a bit of a crime scene afterwards.  BTW, peroxide is great for cleaning blood off a painted wall.   

Thirdly as far as putting a drip pan under the PureFlow.  My nurse recommended it, but the ones that Home Depot sold had a weird lip to them that would not allow the door of the PureFlow to open once it was on the drip pan.  So I returned the drip pan to Home Depot and I am now living on the wild side.     I figure if the worst happens, it will give me a good reason to get new carpet, which has already been treated horribly by multiple dogs. 

[Hemodoc]

Once you learn how to set up the machine correctly, alarms on the machine almost never happen. Most of the alarms are from pilot error. Obviously there is a learning curve to working the machine, but once you know this little critter, it is easy to set up, easy to use and VERY reliable. At the beginning, it seems totally overwhelming, but in a fairly short period of time, it all comes together. There are quite a fit idiosyncrasies to get used to and a lot of user tips that make it easier to work with, but there are many good videos of these issues you can find on the internet.

Some patients forego the Pureflow and use bags instead which is my choice. You need a LOT more storage space, but it eliminates the leaks many people get with the Pureflow. The Pureflow saves a lot of space and according to NxStage, the dialysate is better than what you get in-center. The ultra-pure dialysate of NxStage is one of the biggest benefits to this little machine. Inflammation from endotoxins is implicated in some of the adverse complications of dialysis. Europe has already tightened their in-center water purity requirements. NxStage exceeds these.

The first place to start in many ways is understanding how your own body reacts to dialysis in the unit and to begin self care techniques. The hardest task to learn in home hemodialysis is self cannulation. I would highly recommend discussing self care issues with your dialysis team prior to starting NxStage training unless you have already started. Can't quite tell from your post.

[Gerald Lively]

Awright Doc, you got me!!

What the heck is "cannulation"?

Gerald

[YLGuy]

Cannulation refers to inserting the needles.  Self cannulation is being able to stick yourself with the needles.

[Gerald Lively]

I am absolutely positively allergic to masochistic practices.






Yucky pooh!

[Hemodoc]

Not fun is right, but it is the best way to protect your fistula. Get a good teacher and a bit of courage and after a little bit of time, it just becomes old hat. Not fun ever, but what are you going to do. Just part of life on dialysis, but I just wouldn't want anyone else jamming the needles in at all sorts of angles.

[del]

Gerald , we live in a town that still has some asbestos pipes in the water line and the water that comes through our reverse osmosis is perfect. I would never drink the water from the tap but once it goes through the ro it is perfect drinking water - we use it in out wine making!! 
We use a regular dialysis machine (no nxstage in Canada)  We get alarms sometimes but you learn quickly what to do when the machine alarms and how to avoid the alarms.   From what I have heard about nxstage the tech support is good.  As for that nurse not knowing how the stuff hooks together she should be getting somebody who does to show you. 

[Meinuk]

- we use it in out wine making!! 

I really didn't feel the need to post in this topic until I read that!  DEL, you are my own personal hero, and I want to hear more about your wine (in another thread)

Gerald, don't worry about the country/city.  People is people.  (coming form a woman who has milked a cow by hand in the AM and then used that same hand to hold a glass of champagne at Lincoln Center that PM. - there was a shower in between)

When I was on NxStage, my pureflow was hooked up off a feeder valve at the bottom of my bathroom faucet assembly under the sink.  Easy.  There, blue line done, with a quick connect/disconnect for good measure.  I used NYC water from the upstate aquifer.  No problem.

The drain line was a bit more complicated.  A strong drill bit was used to drill through the brass drain under my kitchen sink and a permanent black drain line was attached.  The disconnect was in the plastic line at the NxStage Machine.  All in all plumbing cost me $150.00 (NYC prices) and it was done in 30 mins.

As far was water softeners go, they should NEVER be hooked up to drinking lines.  Ours in London has a direct non-treated line to the kitchen, and we don't drink from the bathroom taps.  In NY, we don't treat our water at all.  In Maine, our water is well water and perfect as is.

Now, don't worry about R/O with NXStage, but DO worry about water testing. Water safety for medical equipment is regulated by your state.  There are various rules that vary.  In NY, while I was on dialysis, the rule was that biomedical engineers needed to sample my pureflow filtered water MONTHLY. This was NOT cost effective for my facility, and when they were inspected by the state, my facility was cited by the DOH for not having proper records on water testing for their at home patients. (oh, and they were also cited for bad practices and giving 9 people Hep C.... but that's another story...)

Because of this DOH mandatory testing, my facility switched to bags only.  Giant 5 litre dialysate bags that took up a lot of space (my dialysis runs were usually 6 bags each).  A box was heavier than a bale of hay BTW. I am was good at lifting both - but then the farm switched to round bales you leave in the field and wrap in plastic, and a lot of kids were out of a summer job/tanning opportunity.

Alarms are alarming, but you get used to them.  So will your wife. The ding that happened every 30 minutes (if memory serves) simply reminded me to chart my vitals.  For me, most alarms happened at start up, and they were just par for the course.  A lot like the sound of the 1997 MF Tractor when it backs up, I hate that safety "beep beep", but it has saved the life of many a farm dog that like to sleep in the shade of the massive wheels (their innertubes were GREAT to use as floats at the lake in summer time...)

Gerald, learn what you can, educate yourself and go with the flow.  From what I have read, you have just the right personality/sense of humor to be able to thrive on home dialysis.

And those needles?  It isn't masochistic when you have buttonholes.  Look at your wife.  If she has pierced ears, it is like when she puts on those diamond earrings that you bought her for your anniversary when you are taking her out on the town for a romantic evening.  If she hasn't worn earrings for a long time, she simply has to find the hole and push them through assertively.  Why? Because life is worth it.

[Gerald Lively]

First, I appreciate these many responses.  They do help.

In certain situations I write in an exaggerated style for the purpose of developing interest in the subject matter.  For example; like everyone, I don’t look forward to jabbing myself with a needle, especially one characterized as “blunt”.  The responses tell me much. Besides, why be dreary of the inevitable.  And the future does not have to be foreboding.

Life is worth living if you live life.

So, I am searching for ways to live life while strapped to a NxStage.  Therefore I must plan.  And planning requires research.  Research paves the way. I will have a way when I walk into the training phase.  If what I see is ugly, I will make up a joke about it.  Then I will move on.

Thanks everyone for the assist.

An aside; squirting barn cats in the face with milk requires a bit of talent.

Gerald