I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Krisna on October 20, 2011, 06:17:47 AM
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Hubby and I did home hemo yrs ago. Back then it took a lot of work to set up and tear down. And with him working all day before it just got too stressful on both of us. Now with both of us having family out of state we are considering going to NxStage.
He still works full time. Some of the staff at my kidney center have talked abt nocturnal dialysis. Hubby's a little leery of that because he's afraid I'd pull the needles out or something. Even though, there are ways to make sure that doesn't happen. He's the one who moves around at night, not me! lol
So, it would be a lot more convenient. But I have some questions...
What kind of time does the set up take? Tear down?
How much room do the supplies take up?
How many days a wk do you do dialyze? And how long do most people have to do treatments each time?
I'm sure there are a lot more questions I have, I just can't think of them right now. Thanks in advance!
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I don't see why you couldnt do NxStage! Do you work too? If he works and you don't, it may be much eaiser with NxStage for both of you. At present, I work days and D. husband in the evenings. Nocturnal would not work out for us either.
I work 7:00- to 3 or 4:30Pm. Mostly off a 3:30 or4:00, it varies from day to day. I get home and fix something to eat, and then set up machine (30 to 45min max). Once he is hooked, I generally D. him no less than 3hrs (3:15 to 3:30 tops). When done it takes aout 15mins to unhook and breakdown machine. Usually finished by about 8:30 to 9:00 give or take!
What type of D. did you do when you did it at home? Are you the one on dialysis?
lmunchkin :kickstart;
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Hi, Krisna!
We did NxStage and what Lmunchkin said is true. The supplies are not TOO bad, especially if you use the PureFlow and make your own dialysate. We generally dialyzed 6 days a week, but some folks do less. My husband at a script for 20 liters, which meant that we could get 6 days of treatment from one box of dialysate mix. So, 4-5 medium boxes of that per month. Then there were the cartridges of 6/large box. So 4-5 boxes of those per month. Add the other paraphernalia such as saline and warmer bags, needles, etc. and you get the picture.
We were VERY happy with NxStage and if my husband's transplant fails, we will go straight back to it. BTW, we BOTH worked 10 hours/day while he was on dialysis.
Aleta
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I don't have many answers to your questions but I am starting NxStage training on 11/1. I have found that I cannot tolerate being at the clinic any more - I really want to be in charge of my own destiny at this point. I am also working full-time and find that in-clinic dialysis is really starting to affect my ability to be present for my job.
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Good point, Cattlekid. We found it very difficult to work full time when he was in-center also. You could not set your hours the way you wanted, it has to be as they wanted. You are going to love the NxStage experience! Just don't let it overwhelm you, stick with it, and you will see that it is fairly simple to learn. Not to mention, you are going to feel great!
Im excited for you and can't wait till 11/1/11.
lmunchkin :kickstart;
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I work 12 hours shifts, so it is a little harder on me. My husband is the one on D, I work 7PM-7AM, he sets up the machine at night while I am at work. Takes him like 10 minutes to carry in the 3 boxes (we do bags) open them all, hang them and set up, then the machine primes for 15 minutes, when it is done he shuts it off. So set up is really only ten minutes that night. I sleep until about noon, when I wake up I have my coffee while checking emails etc., he turns the machine back on for the 2 minute re-prime then he snaps, taps about 10 minutes. When he is done we start treatment. He does 5 days a week 4 hours each treatment. The bags take up a lot of room, sometimes I really wish we did pureflow. My husbands back is so bad now and I think it is from hanging the bags. Our clinic don't offer pure flow and I was happy with bags when I heard how long it takes to mix it, but now I wish he didn't have to lug the boxes and then lift six 11 lb bags over his heard almost every day. But the upside... it beats the hell out of going in center!!
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Vicky, you and your DH have been a Godsend for us. Thanks to your schooling us, we now understand.
Cattlekid, after DH being in-center for almost a year, and seeing all the issues he had, and others had, and now understanding WHY these issues happened, i feel disgusted now. because so much of them could have been avoided with proper dialysis.
In-center, nurses brag about running these patients at blood flow rates of 600-800..on new fistulas, on grafts, rushing them through treatments that make them feel and look like they have been run over by a truck. can barely walk out the door, look and feel like heck, constantly having to get angio-plasty, fistula grams, repair work done. some of them crashing, having cramps, sick as dogs. barbaric comes to mind.
most because of the type of treatment they are enduring. rush them in, suck out so much so quick so fast.
well heck no wonder.
what is needed is a slower gentler dialysis 5-6 days a week, slower flow rates, time for the solids to come across the cells and membranes, time for your body to adjust, etc.
but, many of the patients are not able to do it this way. or like us, were scared of the term Home Hemo..or just plain didn't have anyone sit them down and show their options. it seems to us, and we could be wrong, but many of the patients/family members, come in, do what they are told, don't question, don't educate themselves, and no one talks to them about it. the only reason we pushed was due to the driving. now that we know what we know, it all makes sense. and our reasons are quite different.
this weekend we cleared an area about the same size as the treatment room, for his D area and supplies. should be plenty.
encourage anyone thinking of this to look further into it. we've been out of the center 3 times a week thing for a week now. we have some tweaking to do on his script, but mostly he feels night and day difference.
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I will start training for Nxstage on Jan 16th. My biggest hurdle and fear is self sticking. Seriously how hard did you find it to watch yourself with a rather large needle going into your skin? Learning the machine doesn't worry me, I did PD for 8 years and am used to the amount of supplies. It's just watching, I can't even watch in center. I suppose I should just look and hope not to pass out. LOL
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I will start training for Nxstage on Jan 16th. My biggest hurdle and fear is self sticking. Seriously how hard did you find it to watch yourself with a rather large needle going into your skin? Learning the machine doesn't worry me, I did PD for 8 years and am used to the amount of supplies. It's just watching, I can't even watch in center. I suppose I should just look and hope not to pass out. LOL
The first step is to look. When I started I couldn't look but within four months I was self cannulating. For me the biggest motivator was traveling and using a unit where I didn't know the staff and they didn't know me but as it turned out putting my own needles in made the day to day burden of treatment less.
It's something many people can do, it is something many people can get over.
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I will start training for Nxstage on Jan 16th. My biggest hurdle and fear is self sticking. Seriously how hard did you find it to watch yourself with a rather large needle going into your skin? Learning the machine doesn't worry me, I did PD for 8 years and am used to the amount of supplies. It's just watching, I can't even watch in center. I suppose I should just look and hope not to pass out. LOL
I had problems getting a working access when I started HD, so I used a catheter for almost a year. By the time I finally got my fistula working, I had already decided to do NxStage, so I'm the only person who's ever stuck my fistula. I always thought that I couldn't stick myself with a needle, until I did it for the first time. I'll be honest with you: I closed my eyes the first time that I stuck myself. When I opened my eyes, I was surprised to see that the needle was already under my skin--didn't feel a thing! After doing this for almost a year now, I wouldn't let anybody else touch my fistula. While I was in-center, I used to watch the techs regularly infiltrating patients' fistulas. I haven't infiltrated my fistula even one time [knock on wood]. Unlike the techs in the center, you can feel if something's going wrong when you stick yourself. Also, you'll tend to take your time when you're shoving a steel needle into your own flesh--something that the techs aren't going to do, because they've got to stick 10 more people in the next few minutes.
Frankly, you'll take better care of yourself than somebody else ever will. It'll be weird the first couple of times you try it, but you'll get used to it in no time. Believe me: it's worth the effort!
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i was very fortunate that DH had alot of experience with this (needles) and he does it well. i could do it if i had to, but its the one part i didn't want to do. he had no problem, as everyone said, if you do it yourself, you can feel and know more what your doing i think. he is using the cream but says he might not now so he can really feel where he is going. i can do the rest of it.