I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: texasstyle on March 10, 2010, 12:50:50 PM
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So, we're maybe a step closer to thinking about doing the treatments at home. I still have some reservations, but I guess it's one step at a time. I believe we need to have a "clean room"? Is that what they call it? One room set aside for the treatments. Do all your supplies come in at once or weekly & importantly, how do you properly rid the blood tainted supplies? (tubing etc.. ) Is it OK to lay on the couch or do you have to sitting upright with your arm still like in center? Any wee bit of information is appreciated. Every little bit helps in making a decision. Thanks!
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Texasstyle,
Home hemo is the way to go... Are you referring to NxStage? If so, the supplies are shipped monthly. They include, cartridges - dialysate, drain lilnes, and warmer bags. If you use the pureflow - this enables you to make your own dialysate - you will need much less storage.
You can do your treatments however you wish, lying down, sitting etc... The area should be clean. Regarding waste products, you could take your needles in to your center for disposal. Cartridges are thrown out along with all the lines. Boxes can be recycled or thrown away.
Home dialysis is much better than in center. You are in control and in charge of your own treatments. It is also much healthier since you will be dialyzing 5 or 6 days per week instead of 3.
What type/brand of dialysis were you thinking about?
///M3Riddler
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We are at home with NxStage. Hubby sits in a chair identical to the in center ones. It reclines...periodically he will doze off but not normally. I think if he were to lay on the couch his pressures would go out the window. But who knows.
You need quite a bit of room even if you have pureflow. Also it is helpful to have one of the clear roll-around things that our center had, I am not sure if yours did nor not. When you train you will see what I am talking about. We went to the ends of the earth to find one with four drawers insted of 3 and it is double the size of the one at the training facility. Hubby reinforced it with 3/4 plywood on the top as it was cheap plastic and bended under the weight of a pen. :O)
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Well, not sure what kind. Just starting to really investigate. I want to do a full research on what's best for us. I say "us" because I'll be included too ya know! lol On the whole it seems like everyone's pretty happy with some form of home dialysis. Right now it seems scary & overwhelming. How do your weekly blood labs get done? How often to you have see your Neph. I'm of assuming you must got to his office frequently. I think "change" itself, is a little scary for me. The fear of not knowing what to do properly or what if something happened. On a brighter note, my gym is offering a CPR course coming up. I'm very happy about this because I've been wanting to take one for a while now.
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We do labs every other week, or twice a month. You could think of it as a paycheck if you want to have fun! Ha. The labs are not scarey, it is very easy. After hubbys A and V needles are in I draw the blood in a vacutainer just like they do at the clinic. Every other week there are 3 pre dialysis tubes and 1 post dialysis tube, and then the next weekend there is just one pre dialysis tube. You pack it up, call FedEx and stick it outside. Very easy cheesy.
Hubby is on Medicare, in order to be in compliance with them he has to see the Neph once a month and see the clinic once a month. So there is your answer.....once a month.
Oh, here is a piece of info no one ever tells newbies: you have to send in treatment sheets to your clinic. They are sheets you fill out every time you do dialysis, it contains all kinds of info including blood pressure readings you have to take every 30 minutes during treatments. There is something also that he could not do by himself -- take his own blood pressure. He cannot move his left arm to get the cuff around his right arm to take the pressure! I don't know how these people who did it by themselves did that. Anyway our clinic requires that we send these sheets in every single day that we do dialysis. We have a fax machine, that is how we get it there.
The first week of training I was convinced that we would not be able to master home dialysis and I was scared to death. By the end of the second week I felt a lot better and knew we would be OK.
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I do my treatment in my bedroom, We do my bloodwork once a month and call fedex to pick it up and the following week I see my neph at my dialysis clinic. I take my treatment sheets in with me, my nurse calls once a week or I call her. My supplies come once a month from Nxstage, and I pick up my other supplies from my clinic such as needles, saline, bandaids, gauze, heparin, and a sharps container. I pick up hand sanitizer and thick black garbage bags at the store. Change is scary But Im glad I chose to do home hemo I feel so much better and I get to include my husband in my treatment everyday he understands everything better now.
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Oh wow, what a lot of great information. Thanks! I went to the NxStage website and ordered a brouchure. ( I think I did it correctly) I'm going to find out if the center has more information.
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There are some great pictures of setups here on IHD (you have to be logged in to see the photos). http://ihatedialysis.com/forum/index.php?topic=375.0
(http://ihatedialysis.com/forum/index.php?topic=375.0)
I did my NxStage in a tiny one bedroom Apartment in NYC. It wasn't easy, but it worked for me. (I still dream about being surrounded by boxes!) Here are some on delivery day after they stopped me using the pureflow (it was a sad sad day at my little crackhouse when I was no longer allowed to use my pureflow).
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One thing I would suggest is to double check with NxStage about how much they're delivering on the first delivery. My clinic told me to expect about 20 boxes, which I had room for in my 1 bedroom apartment. Imagine my surprise when 40+ boxes showed up. NxStage had doubled the order without telling me or my clinic because of where I fell in their delivery schedule. A little overwhelming for a first delivery and, unfortunately, the start of lots of miscommunication between me & NxStage.
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You don't need a separate room - my machine shared space in my sewing room. It does help to keep pets out, though. Yes, it's a lot of boxes, but I had pretty much everything in an 8 foot by 10 foot room that also included a work bench, a desk and a craft table, as well as a recliner and the pureflow with the nxstage on top of it. I bought a sturdy floor to ceiling garage shelving unit, and that stored most of my supplies for using the system with the pureflow. The bags for emergency runs without the pureflow did get stacked in another room because of space issues. You'll need a place to recycle the boxes, but the rest can go in regular trash bags and into the normal trash pickup. (They did suggest double bagging, and black bags to keep from freaking people out!)
You can use a recliner, a couch, or a bed - whatever you are comfortable with during the time on the machine.
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Anything is "do-able" if you put your mind to it. We live as a family of four (plus a very curious cat) in a 750 sq foot two bedroom apartment, tight fit but it works!
My dh's set up is in our bedroom. He received a regular recliner chair from the center (they picked it up and delivered it to us from a furniture store), we bought a changing table to store the supplies and a small table on wheels for when he cannulates.
We have a large wall closet in our living room, one side is taken up with all of his NxStage supplies (PAK, SAK, Cartridges, boxed fluid, warmer bags). One box of cartridges and all of our saline boxes are in the bedroom on the changing table.
NXstage sends supplies monthly, ours is delivered by a local service. If its just a few boxes, delivered via UPS.
Labs we do weekly, sent to a central Davita lab via fed ex. We have the supplies on hand at all times :vacutainers, tubes, centrifuge and packing materials. You get training on how to prep labs and certification to send blood.
All other supplies we pick up at monthly clinic visits.
We fax flow sheets after each run. Our center gave us a battery operated blood pressure machine, he keeps it on his arm during the run, hits the button, records.. he can run mostly by himself, he now has an upper arm fistula requirng a bit of help to cannulate, remove needles and to tape up. When his lower arm fistula worked, he went on training trips and took care of everything on his own.