NxStage supplies and training partner questions

[Jerlic]

So I brought up the idea of NxStage to my mom and her biggest concern was not having enough space in the house for supplies.

How many boxes do they deliver?
How big are the boxes and how much space would I need?
I heard that the pureflow system helps cut down on space needed. How much space would it save and do you still receive the pre-mixed bags of dialysate?
Finally do you absolutely have to have a partner? Is it possible to be able to set up everything yourself if you are in good health except for kidney failure?

[amanda100wilson]

I do recommend Pureflow.  I really cuts down on the amount of boxes.  Nonetheless, they still recommend a Week's supply  of the hanging bags, generally speaking, ten boxes.  In addition to this, a. month's supply would probably be five to six boxes of SAKs  and two to three PAK boxes which are big.  On top of that, there would be miscellaneous supplies such as gauze, needles, syringes etc.  A spare  room, large closet or clean, dry garage would work as storage.  I would just go ahead if I were you.   Alternatively,a garden shed if you have a back yard.   If it doesn't work out, , you can always switch.

[Angiepkd]

I turned my coat closet into storage for the daily supplies, like gauze, needles, gloves, cartridges, saline, lab boxes, etc.  The larger boxes are stored in my husbands closet.  I generally have about 20 boxes of spare cartridges, SAK's for the PureFlow and a weeks supply of hanging bags.  If I didn't have the PureFlow, there would be much more storage needed.  Each box of hanging bags contains 2, 5 liter bags.  Since I do 25 liter treatments, that takes 2 1/2 boxes each time.  I haven't had to use the bags yet.  I think my first delivery was about 30 boxes, and I average 10 to 12 boxes each month.  They are pretty good about not overloading me with supplies, and when I order I tell them what I have, not what I think I need.  The delivery person brings everything in the house and will put it wherever I ask.  I order my saline from Baxter, and they usually deliver 3 boxes every couple months.  I squeeze these in the coat closet.  I have to order all of my other supplies from my clinic and pick them up at my monthly visit.  As crazy as it all sounds, it really works well and doesn't take up a huge amount of space.  The boxes are what I would call medium sized (similar to a couple of gym shoe boxes put together).  I think it would be doable in most houses or apartments.

As for the partner being necessary, I am not sure.  Some centers will allow you to do home hemo alone, but mine does not.  That being said, I do all of my set up, needles and paperwork myself.  My problem right now is I can't pull my own needles at the end.  My fistula is very zig-saggy and the needles are at weird angles.  I have every intention of figuring out how to manage this last step, but for now my husband helps at the end.  Sometimes I will get started early and be almost finished when he gets home.  One thing to keep in mind is how your mom does with blood pressure while dialyzing.  I am very lucky in that I don't cramp or have huge drops in BP.  Some people do and can pass out or need assistance.  I wouldn't  consider trying it alone until she has a few months of treatments and can see how she feels during and after.  It is definitely possible to do everything yourself, but if a problem arises it is important to have someone who can help.  My treatments have been pretty smooth, other than a few mistakes I made with the machine (forgetting to clamp or unclamp a line, etc).  That is not always the norm with some people, though.

Hope this helps!  It really does become routine and pretty easy most of the time.

[amanda100wilson]

duh, O forgot cartridges!

[KatieV]

The number of boxes will depend on your treatment.  For a year and a half, I used 20 liters of dialysate 5 days a week.  There are 60 liters in the Sak , so I'd use 2 Sacks a week.  With the cartridges, that was about 8 boxes a month plus 1 or 2 Paks and a weeks' supply of bags.  For me it was about 20 total.  They fit well in our spare bedroom closet, which isn't big.  We also have a large wooden cabinet that all the little supplies fit in.

I am now doing Nocturnal with NxStage.  I use a whole 60 liter Sak each night and do 6 nights a week.  That is 16 boxes a month plus Paks and a bunch of bags.  Because of my needle issues last month, I didn't use the supplies NxStage expected me to, so I have a lot more supplies right now than normal.  There are 38 boxes piled in the living room.  I do also still have some of my older prescription (potassium difference) taking up room.

We live in a small 2 bedroom apartment and have more than enough room for the supplies.

My first center required a partner and my husband trained with me.  My new center doesn't if you use their internet monitoring system.  From 5 pm to 8 am, they have "observers" watching your machine numbers.  It depends on the center.

I definitely recommend using NxStage!