Heres what we've decided, so need imput from Nxstage Users

[The Noob]

Thank you all in advance:

due to economics reasons, workloads, etc., slow moving process of future transplant, DH and i sat and discussed what options we have, best way to proceed.

We will continue at current transplant clinic, and also have him dual listed at U of Michigan.
As of 3 months ago, he had a living donor, but due to slow progress of it all, the window on that may be closing, or may take much longer than thought.

We are going to discuss with clinic to train for Home Hemo. We need to do it now before winter is in full swing.
He has 26 yrs as a paramedic on a special IV team, and I have 8, though not nearly as extensive.
So I think the cannulation won't be difficult. The clinic is now using his fistula and its going well. All my diligence resulted in the director of the clinic actually doing his in center, and she calls me to update and ask ok's constantly. Why? your guess.
So I will go sit in on a few of his hemo sessions to get a better view, and we will see when we can start training.

Our issue is that since we've moved to our other place, the bathroom is on the other side of the great room, and am wondering what plumbing is required? How is this thing drained?
We know we will use the bags at first, so how much storage?

We both want him to feel better while he waits for TX, and this seems to be it.
What is the preferred machine? What are insurance issues? How difficult is it to use the centrifuge and how large is it?
Sorry for all the questions. The main concern I have is this home has one bathroom, across the other side from our sleeping area. Thats the only plumbing there.
Thanks to anyone who can offer info. 

[cattlekid]

Hello Noob!

I don't have a lot of answers to offer.  However, I wanted to let you know that I am in the same planning stage that you are at.  Since I now have a maturing fistula, I have decided that once my current clinic gets my fistula up and running and I get my catheter out (currently scheduled for late November), I will be going to NxStage as well. 

I have already contacted NxStage and they hooked me up with a patient rep who has been doing NxStage for 7 years.  She was a wealth of information and will continue to be as I go through the process.  I also contacted the clinic that I am planning to switch to (my current clinic does not do NxStage) and have an appointment for next week to look at the machine and talk more about the training process.

I am planning on doing the PureFlow because I do not want to deal with all of the bags.  I know I will have to clean out some type of storage because I will probably have to start on bags until I can get clearance for my water testing. 

I am really excited to be even on the baby steps for going home.  I really am tired of missing out on life while I am stuck in the center.

[Bill Peckham]

During treatment the machine needs to be within reach of a drain. Each disposable drain line is 25ft long and you can put two together. The effective reach is about 40ft.

If you use PureFlow, it doesn't actually have to have a water source during treatment, so if you put all this on a dolly (I have a pretty heavy duty dolly made from carpeted 2x6s and heavy casters (it's over built)) so that you could have the PureFlow getting ready near a water source and then wheel the cycler to in front of the TV for treatment (I think everyone, at some point, wheels their machine outside, but think about that ... sunlight is bad for beer, how good could it be for your blood?). If you are going to treat on carpet you might consider including a tub in your cart design.

If you're using bags then the drain is the only issue.

Storage is always going to be an issue. When I received my first months supplies http://www.billpeckham.com/photos/dialysis_photo_archive/p6090006.html
I thought is was about equal to a cord of wood. I think cords are the proper measure to describe the amount of supplies you need to get through a month. Of course how many boxes you need depends on how much dialysate you use each treatment. Each of my dialysate boxes contains two 5liter bags (10 liter per box); they're size: 15"W X 13"D X 7"H. I stack six to a stack (they're double walled).

The PureFLow bags come two to a box. The ones I get make a 60liter batch of dialysate and I use 30 L/treatment, so each box makes 4 treatments worth of dialysate (for me). The SAC boxes are 16.5"W X 10.5"D X 5.75"H.

There are also boxes for the cartridges - they're somewhat bigger. 6 cartridges to a box (those are three of the four boxes on top of my supply cord in the photo)\

And you need saline for each treatment - 12 one liter bags per box. All the needles and supplies for treatment. And cleaning supplies. And miscellaneous supplies: the drain lines come 24 to a box (I use one drain line a month); the bags need a way to string them together - they're called warmer bags, 24/box; the PureFlow has a replaceable purification pack, called the PAK - it last 12 weeks but you can't be sure, I always like to keep two in stock.

Whew it is a lot. I live in about 1,100 sq ft. Managing the supplies is a job. Rotating the stock, ordering, receiving delivers. But after a while it becomes routine.[/font]

[The Noob]

thank you both so much! ok, we now live in our other place, our great room is 1800 sq ft and all open. there is a small bathroom. the wate ris from a well and no softener. there is the usual drains, but we have a rainwater system separate for all other needs. its run through a filter.
funny about cords of wood..LOL we have a wood stove to heat. i also took a small bit of savings and bought one of those radiant heaters today, on sale 149$, see if that works too. this is going to be comical as alot of what we do is off-grid. we do have electricity, should be ok.
the back corner is where i am building a bedroom. right now we have 2 futons in the "living area". its all clean and organized but can't wait to see what the rep says.
i checked into insurance and they will supply a dialysis chair. this can be put near the bathroom (and tv) and drain. we have a well/septic/leach bed.

now what about trash? we burn all of ours in our large fire pit. what can't be burnt is taken to dump once a month. we have a few sharps containers. what about the dialysor?

i'm going to go sit in with him monday and watch how they do it all. i am well trained on PD, but this is going to be totally new and a lot more challenging.

the benefits i see are my husband is going to fell better, no 3x week drives to clinic an hour away in the winter. gas costs are eating us up. he is depressed being in center. maybe we'll get a tad normalcy back?

last but not least, what about pets? homeowner insurance extras?

thanks for your help and support. i'm excited and a little nervous but this in center treadmill needs to stop.

[Bill Peckham]

You are probably looking at two large trash bags per week (I use Costco's 33 gal drawstring bags).


My dog is my helper

[cattlekid]

I asked about pets and was told that pets are no problem.  We have a beagle who will be curious, I'm sure but I think will easily adjust to the routine.

[Bill Peckham]

That photo up above is revealing in a psychological sort of way.

That's 2001 or 2002 when I first went home using a B Braun machine. The room I am in is a converted spare bedroom I had been renting out; in the process of converting it to a dialysis room I painted the walls. I didn't really think about the color scheme I did it on the fly looking at the examples Home Depot has available.

Looking at the photo now, with the distance of time, it looks like a dialysis unit. Down to the blue chair rail stripe. Before this I don't think I had ever considered painting a chair rail stripe and I haven't wanted to do it again since. I had, by this time dialyzed in scores of units all over the world and I think I internalized what a dialysis unit looked like. When I decided to switch to HHD after 11 years incenter, in my head I must have thought about it as bringing a dialysis unit into my home.

These two pictures are from today. A lot more color. Now it's more like I've brought my house to dialysis. The only thing that is the same is the dog (not photoed) and the emergency lighting unit on the wall. It's messy too, just like the rest of my house

[jbeany]

My cat quickly learned the routine, and knew when she was allowed to be near me and when she wasn't.

I used well water and didn't have any problems.  My clinic ran water samples first, but the filter system is really good.

I'd suggest a throw rug over the carpet, if you plan to run the pureflow in a carpeted room.  Sooner or later, it will leak - that's inevitable.  If it's on carpet, you can pick up a big throw rug and haul it out to dry. 

I bought 6 ft tall garage storage shelving unit - it held most of my big boxes, with one extra stack in another location.  I also got a 4 ft tall rolling plastic drawer set - the kind Walmart sells for about 25 bucks.  I kept all the little stuff in it - heparin, needles, bandages, etc.  The wheels made it easy to pull up next to my recliner while I was on, and easy to put it out of the way when I didn't need it.

A centrifuge is easy to use - just make sure it is balanced by putting vials with water on the opposite side of the blood-filled ones, and keep it on something sturdy.  They aren't that big - mine wasn't any larger than a medium sized food processor, and sat easily on top of a 12x12 dresser.

Doing it at home is sooooooo much better!  No driving in winter weather.  No germy patients and nurses.  No noise except your own family/music/tv.  No waiting around for a tech to put you on.  Your friends can come over while you are hooked up.  No nonsense restrictions on cell phone use.  I used to pull up a big folding table right to my chair and sculpt while I was on.  Once I was far enough into the learning curve, it was just another chore to do at home in the evening, like laundry - a bit boring and annoying, but no big deal.

[cattlekid]

I hope that I will be able to knit while I am on.  Originally, I was going to have a fistula in my wrist, which I think precluded knitting.  Now that it is in my bicep area, I think that knitting will turn out to be a-okay.  Scarves for everyone!!   

[The Noob]

these are great! love your post Bill about the Freudian slip in Home Deco.  Cattlekid, looks like you and us will be on the learning together. jbeany, thank you for the advice too. i am thinking we will get it, its the driving to toledo for the training i'm not fond of. but you do what ya got to do.

one thing is we still have all the gizmos from PD, which helps. and good to know about well water. its a small bathroom. nothing in there right now but a compost potty and wash stand. but its plumbed to the septic.

ok Bill, 2 bags a week, is this burnable trash?

oh yes, forgot one more benefit: no more drive by visits from the dietician while in the chair talking to you like a miscreant..

[rocker]

We've been on well water with the PureFlow for two years now, no issues.

[Bill Peckham]

ok Bill, 2 bags a week, is this burnable trash?

It's all plastic, probably will require more visits to the dump.

[lmunchkin]

I made a dolly with wheels that I put PureFlow cabinet on.  Believe me, when it is full of 60L dialysate, you are not going to move it.  We have carpet in our home, so the dolly with wheels came in handy.  I think I have the measurements for those cabinets somewhere for anyone interested! 

Glad to hear of those who are on well water not having any problems.  The filtering system in the pak is unique.  Look like giant water filters lined up in a row ( 4 to 5 I think).  Not much gonna get through them puppies.

lmunchkin

[rocker]

Glad to hear of those who are on well water not having any problems.  The filtering system in the pak is unique.  Look like giant water filters lined up in a row ( 4 to 5 I think).  Not much gonna get through them puppies.

There is also a UV light somewhere in the PureFlow for sterilization of the water.  I'm not sure where it is - it may be behind the door on the front (where you put the lines in when loading the SAK).

[Bill Peckham]

Glad to hear of those who are on well water not having any problems.  The filtering system in the pak is unique.  Look like giant water filters lined up in a row ( 4 to 5 I think).  Not much gonna get through them puppies.

There is also a UV light somewhere in the PureFlow for sterilization of the water.  I'm not sure where it is - it may be behind the door on the front (where you put the lines in when loading the SAK).

I thought the UV was in that metal tube to the upper left as you face it but I don't really know.

[Meinuk]

This is about Trash and NxStage

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/08/home-hemo---tra.html

Home Hemo - Trash & Recycling - My Carbon Footprint

I dialyze at home using NxStage with Pureflow.  Which means that I generate a lot of garbage on a daily basis.   As I live in NYC, I follow their guidelines for recycling.  Each jurisdiction has it's own guidelines/rules - I advise that you check yours for proper disposal instructions.  Here is how I dispose of my spent dialysis supplies:

Cardboard Boxes:  I break them down with a box cutter, tie them up, and leave them curbside for pickup on recycling days.  Bill puts an ad on craigslist and gives his boxes away.

Dialysate Bags & Warmer bags (made of pvc): When I use them, I put them in a black garbage bag, and throw them away with the regular trash.  In NYC, PVC is not considered recyclable.

Pureflow sac (made of polyethylene/nylon): again, NYC does not accept this as a recyclable, so I send it with regular garbage.

Cartridge (mixed materials): Because a used cartridge has been exposed to blood (even though it is rinsed with the rinseback) I always leave the saline bag attached to the cartridge when I am cleaning up after my run.  I was told that the cartridge assembly it is to be bagged in a black bag, and treated as garbage.  The logic behind this is that after rinseback, the blood exposure is equivalent to "heavy wound care" and thus would be discarded as regular household trash.

Purepak:  every 90 days, one goes out on the trash (although it is usually taken by trash pickers before the garbage can even be collected by the city  - I wonder what they think it is?)

Syringes & Needle Sets: these are considered medical waste, and are not to be thrown out with regular garbage.  I was given a sharps container, and I simply bring my used container to my monthly clinic visit and exchange it for an empty one.

The upshot to this whole rundown is that I generate a lot of trash on a weekly basis.  I wish that there were some way to be able to recycle the dialysate & pureflow bags at least. There have been numerous blog posts and discussion threads on this subject - but nothing official from NxStage or any of the providers that I have queried.

[Meinuk]

On a funnier note, one month, I went through 3 Pur Paks for my Pureflow, and they are really expensive and really heavy.  When I set them curbside for trash day, someone took them, thinking that they were of value.  I always will wonder what they thought they were getting from the trash.... (and now I wish I had opened one up to see what is inside)

[The Noob]

hey thanks you all, talked to our training nurse (she's a country girl too) and she says since we will be using bags and not doing this for too long, we can burn almost all of it. we have a large deep burn pit. we're already living somewhat off-grid, so i'm not going to add to the dump and they have a big sign there that says no dialysis materials. we don't have trash pick up out here and the dump is over 20 miles away in the opposite direction. needles and syringes of course go in sharps containers.

[Meinuk]

To save space in my sharps containers, I only put the needles in them.  I would cut the needles off the tubes of the dialysis needles (with scissors), and the needle was removable from the syringe I used for Heparin.  It is amazing how much space you can save if you just put needles in the sharps containers, and throw out all the plastic that they attach to. I'd bring my sharps container into my unit every few months. (I hated carrying my sharps containers on the NYC subway.)