I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Neo on January 13, 2008, 08:04:31 PM
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From people that use it ..I currently do in-center nocturnal hemodialysis..I go in Monday, Wednesday and Friday night...Its actually pretty good I sleep pretty good thanks to benadryl injections of course, but I was just thinking how wonderful that would be to hook up too a machine whenever I needed too like tonight is Sunday night and i haven't dialyzed since Friday night and im starting to feel kind of crappy with fluid building up and all and it would be nice ot be able to dialyze tonight..Anyway please give me the pros and cons and the ways and times you use it thanks a lot....
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I am currently doing PD but i would still like to reply :) If you think you can handle sticking yourself with the needles, if you have the space for boxes and boxes of supplies, i would say GO FOR IT, those are the two main things that i think about, like i said, i am currently doing PD and at my center they are thinking of adding NxStage training, i would love to be trained on that and still remain on PD and that way once my peritoneum gives out, i am ready to go straight to NxStage. I have heard nothing but great things about NxStage and i am a believer. I am sure other members will give you their views as well, Good Luck Neo, keep us posted on what you decide and how its going for you ok. Hope to hear from you again soon :waving;
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I am going on Nocturnal dialysis this summer in center. I hope I like it. NxStage would probably be good for you. I'm sure others will reply who are actually on it.
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I started out in-centre, but I was only on it four months before I switched to NxStage (most of that four months was waiting to start home dialysis training). I'll tell you, I couldn't get out of that centre fast enough, and the ONLY way I would go back is if they started offering NxStage at home. That little white machine literally saved my life. I love being in control, being able to dialyze when I want, the clinical benefits, the portability of the machine, you name it. I'm still waiting for Davita and NxStage to reach a conclusion regarding nocturnal dialysis so I can do it. Some can do it, and others can't. I don't know all the particulars, but it seems to be a matter of whether your doc would prescribe it. That will get worked out eventually, though. I'm not going to lie, but NxStage does have some disadvantages, but it's advantages over in-centre, even in-centre nocturnal, far outweigh the disadvantages. Despite the nocturnal issue, I ain't lookin' back.
Adam
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I do a 3 on, 1 off schedule, that changes whenever I need to accommodate things that are going on in the rest of my life. I love having control over the schedule - it's my choice what day, what time, what place even, although I haven't traveled with it yet! Do you have someone willing to be a partner with you? Most centers are reluctant to train a person to do it by themselves, although there are several people on here who have managed it. It is a big chunk of time out of your week - you'll have to do at least 5 days, and the "two hour run time" they talk about is closer to 3-1/2 or 4 by the time you do set up, take down, and site holding. Most centers aren't offering a nocturnal set-up with the NxStage yet either, so it will likely mean taking out time from regular daylight hours, unlike the nocturnal you are on now. I've never done nocturnal, so I don't know how it compares, but I do know that the more frequent daily makes it much easier to deal with fluid gains. You can actually drink more fluid on it since it comes off more frequently.
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My husband (Marvin) and I both highly recommend NxStage. Yes, it takes a lot of time (all total about 4 hours a day -- when you count set up time, treatment time, and machine breakdown and clean up time) six days a week. It also takes adequate space for all of the boxes and supplies. However, the benefits -- for us -- far outweigh the disadvantages. The benefits for Marvin are much more control, flexible times for treatments, better labs, and better overall energy and feeling every day. After 13 years on dialysis, NxStage has changed our lives -- and for the better.
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I'll chime in - I was in center 4 hours m/w/f for 10 months. Then I started Nxstage - no looking back for me. Now I am 5x a week - 30L Sa/Su; 20L Tu/W/Th.
Like Susie said, it is an adjustment - but in hind site - a pretty easy one (at the time I did have a couple of overwhelming moments - but the people here really helped me maintain my perspective.)
Now I go to the Dialysis unit once a month to have my clinic visit - just like a doctor's appointment. NxStage for me means control. I am in the drivers seat - dialysis on my schedule. There is a lot of added responsibility, management of supplies and yes, my living room looks like a clinic - but those are small inconveniences - compared to dialiyzing only 3x a week, trudging back and forth to the unit and being at the mercy of tech who go by the book rather than how I feel. (Taking off too much fluid because my dry weight is wrong - infiltrating me because they aren't familiar with my anatomy - and that annoying waiting for a chair if the unit is backed up - or having to wait to be taped up before you can go home - because the tech covering your section is busy)
Now, I dialyize in the comfort of my own home, watching my own TV, on my own schedule - and I've never felt better.
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I'm not sure what more I can add...but you made a strong point in your original post...you feel crappy and would like to dialyze, but you have to wait to go to center. Here's an example...I got a case of the shingles (common in cancer patients) so my doctor gave me Valtrex. My neph reduced the dosage, but we all forgot that I was scheduled to take a day off. Well, that night, the Valtrex that had built up in my system caused me to have some wicked hallucinations. My wife looked up Valtrex and, YEP, that's a side effect if it's not removed from the body. So at 2 am she hooked me up and got that stuff out of me.
This is extreme, I know, but it's an example of the options you have with NxStage that you don't by doing in center. You also, as others have said, have control...when you do it (I do 5 treatments between Monday and Sunday), what you do while on treatment, it frees up your diet and liquid intake, in my case it allows more time at home with my family...I can't say enough good things about it.
The struggles with it...scheduling while working full time, supplies, etc. are minimal.
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I have to say the others have covered most. I strongly suggest a partner. I am amazed at the people who do this alone. We have been doing NxStage 2 years and have run into situations that I don't know how anyone on the machine and alone would be able to handle. It is true you can dialyze on your own schedule, providing you have a 4 hr window. there are a lot of supplies. The tradeoff is worth it since he feels pretty good most of the time. Good luck, remember you can go back to in-center if NxStage doesn't work out for you.
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I really can't do anything except agree with everyone else -- Go for it. You can always go back later if you don't think it is worth the effort. (But i'd bet you don't. ;D )
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Here is my most recent update on my experience with overnight treatments with the System One http://www.billpeckham.com/from_the_sharp_end_of_the/2008/01/sunday-me-blo-1.html I am starting to look at today's schedule and feel like I'm out of time and it is only a bit past 9 in the morning. Then I decided that I would do an overnight treatment tonight and suddenly I seem to have plenty of time. I agree with what everyone here has said the supplies and cannulation seem to be the biggest issues and you can always try it and go back to incenter.
As to Cev's suggestion to have a partner I am not against partners but since I don't have one I don't think it should mean that I have to follow a unhealthy, infrequent, incenter schedule. Having a partner is not something that is within the control of most of us (I suppose there is the mail order partner bride route) and if you are single then going it alone should be an option.