I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: karen547 on July 22, 2008, 08:18:43 AM
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I saw the article about the portable dialysis machine and am real interested in it! I have come to realize that while I like my unit and all, I am going to have a hard time going full time to school, and then raciing the traffic to get to treatment at 4:45pm mwf. I did it last quarter at college and was so tired, and didnt like my busy schedule. I want to be able to go to school, and just basically focus on that. I just think it would fit into my life better, and maybe I wouldn't dread the treatment so much if I could do it at home! I know there is a separate board for this, so sorry admins if you need to move it! I also contacted NxStage and hopefully they will get back to me soon.
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If you are able to do it, definitely go for it. Home dialysis simply rocks! I did NxStage for a year, and I'd still be doing it if it weren't for my access and my desire to live alone. That is an issue with NxStage. It's hard to find a centre that will train you by yourself. Most centres (and NxStage themselves) want you to have a partner. People have successfully done training alone and don't have a partner (Meinuk for example). I always did my treatments 100% myself, and I'm comfortable doing it alone, but my particular centre won't let me. Well, if you can get past that issue, NxStage is the way to go.
Adam
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The schedule is so much more flexible, plus most NxStage users have more energy than those on in-center dialysis. I hope it works as well for you as it does for me!
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I've got a dumb question for you, Adam. How does the center know if you're doing it alone or not?
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I've got a dumb question for you, Adam. How does the center know if you're doing it alone or not?
Not a dumb question at all. Technically I suppose, they wouldn't "have" to know. In fact, before I decided to go to PD, I was actually considering moving anyway, and living alone anyway. I have a friend that I'm going to be living near, and he was going to become my official "partner". The centre wouldn't have had to know that he wasn't there for ALL my treatments >:D My biggest concern would be if they "found out", they could boot me out of home dialysis period. I was prepared to take the risk, and if anything did happen, I was ready to deal with it, and to take full responsibility. Who knows, if I one day get a better working hemo access, I might be ready to take that risk, because even though I love PD (except for the leaking), I would still rather do nightly nocturnal hemo. So I suppose, if one is confident, and able to do solo dialysis, and doesn't mind "stretching" the truth a little, then I suppose it can be done, despite what the centre says.
Adam
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If you are able to go on NxStage, definately do it.
I have been on NxStage since January, and I Love It!!! I have been able to return to working on a full time schedule from part time. Also, I feel a lot better and do have more energy. I just can say enough for it. I did enjoy the people at my dialysis center, but I did not enjoy getting up at 5:30 in the morning three days a week to go to dialysis. Now, I do it at night after work, and just relax on my couch either on my laptop or watching any one of my 300+ channels of TV, not the 70 or so at dialysis...all the good channels are above 100 on my cable system.
I know there are people out there that do it alone, but I will never do my dialysis at home alone. Within the first two weeks, I had a couple of bad crashes to where I was passing out and if my wife wasn't at home, I don't know if I would still be around. This is just because I was still getting used to the machine and the crashing feeling is a little different on NxStage vs in center (at least for me it is). I haven't had a crash since (knock on wood). I have gotten close at times, but either drinking some water or adding a little saline took care of it. Part of the problem is that I have been steadily putting on weight as my appetite has returned since going on NxStage so my dry weight is creeping up. I have raised my dry weight by 4kg since being on the machine.
I am also planning on going back to school in the fall of 2009 and being on NxStage will allow me the flexibility to do so. I can't wait.
If you have any other questions, let me know.
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What are the costs? I mean the insurance covers it right?
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It's covered the same as in-center. I don't pay for any of it. NxStage ships their supplies once a month. Fresenious or some other medical company will also deliver supplies that NxStage doesn't carry, like syringes and saline. You may save money on gas, since you don't have to drive to the center all the time. Your electric bill may go up a bit, but check with your electric company - mine offers a reduced rate for people running medical equipment in the home. You will use about a bathtub's worth more of water a week. You will produce a lot of trash and have to deal with recycling all the boxes - that may be an expense for you as well.
Setting up the room will cost a small amount. You'll need a reclining chair, shelving and storage for supplies for supplies, and a bit of time to work out the plumbing connection to the sink. All the parts for that are provided by nxStage, but you will need someone with some very basic plumbing knowledge to hook up the water and drain lines.
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Regarding the plumbing connections, NxStage supplies a variety of different fittings for the water and drain lines, they are well designed and rather easy to install, in our case we decided to put Sharon's recliner near the wall that backs against her bathroom, I drilled a hole through the wall to put the water and drain lines through, the water fitting was hand installed right above the shut-off valve after removing the water line from it, reconnected the water line onto the new fitting (the new fitting has a on-off lever to stop the flow to the cycler) the new water line simply pushes into the fitting, no clamping required and is drip free. The drain line goes in to a clamp that is placed around the sink drain pipe (2 piece clamp, connected by 2 nuts and bolts and a piece of rubber to make it leak free) you use a drill to pierce the drain pipe with a 1/4" drill (if I remember right) then push the cycler drain line through the same opening you just drilled through. it took almost less time to install than to describe it and has been trouble free for over a year.....
Tom
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Go for home hemo, karen!
We had a sink installed in the bedroom Marvin converted into his home "clinic," and he hooked up the water in-line and the drain line himself. You get a kit when you get the PureFlow/NxStage system. There's a line that clamps to your drain outlet. When you clamp that on there, you mark it (it has instructions on what size hole to drill). Slide it in -- done! There's another valve that you attach to your cold water inlet line. It has an off/on valve that goes into the back of your PureFlow system. They send good instructions. Marvin had his hooked up in about 15 minutes. Perfect fit -- no leaks -- no need to turn on/off water or drain (it's all under the sink cabinet -- Marvin did drill a small hole in the back of the sink cabinet for the lines to go in/out).
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I've been doing hemo at home alone since 2002; 2001 to 2002 I had a partner. The NxStage is the third machine I've used. I think everyone has given you good info - one thing I would note is that the comments re: plumbing assume you'd be using the PureFlow dialysate production unit with the NxStage machine. I believe over half of all NxStage users are using bags of dialysate instead of the PureFlow (though this number changes all the time).
If you were to use bags there is no plumbing connection but there is a significant increase in the storage issue and the recycle/box disposal issue (though I give mine away on craig's list and I have met some real nice people).
I'm doing 7.5 to 8 hour treatments overnight and am very happy with this routine. I say if it is an option take it. Not only do you feel better (more dialysis=feel better) it is logistically easier and has made doing daily dialysis feel like less of a grind.