I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Neo on May 28, 2008, 01:11:03 PM
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I do in-center nocturnal, but I was checking this out. And if you can hoook up whenever you want I would think that would be awesome! like if I felt like I had a little too much fluid on me or somehting, i could just hook up to the machine.. Id also like to know what the negatives are to this machine and home dialysis as a whole..
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Yes Neo, I am healthier, and the machine is available to me 24/7 I just need to set it up when I need to dialyze.
There are so many threads about NxStage, and people's experiences. Bill Peckham does extended overnight (nocturnal) treatments at home, in hotels, currently on a boat off the coast of Washington State. He posts about his experiences here and on his blog.
I can't compare my experience to in center nocturnal, but compared to 3x a week, hands down, it is NxStage for me.
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I would give my eye teeth to be able to use NxStage and, if I'm ever in a position where I can, I will.
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Neo, how many nights a week do you do in center hemo?? We use a fresenius machine and hubby hooks up 5 nights a week. He does shifts - 3 nights on , a night off, 2 nights on, a nigth off and then back to 3 nights. He does 7 hrs a night. If he wants to change his schedule sometimes he can no questions asked. he just hooks up when he goes to bed. Lots of times on the weekends we don't hook up until 1 a.m and then we just sleep later in the morning. Hubby has energy plus since starting nocturnal!! He is MUCH healthier and he was healthy on in center 3 times a week!! In my opinion nocturnal dialysis is the way to go if you can do it!!! :waving;
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I used NxStage for a year 6X a week. I dialyzed 2:45 a night on average. I'm not sure about everybody else but it took me about 30-40 minutes to set up and about 20-30 to break down which included the time it took to stop my bleeding. So I went from about 12 hours a week in center (+ about 3 hours a week of total drive time) to 19 or so hours a week at home.
I work all day so I did have more energy at work...but I felt like I was spending all my time at home either on dialysis or doing dialysis related junk (stetting up, breaking down, ordering supplies, having to be home for supplies to be delivered)...and by the time I was done at night It was either too late to really consider going out and doing anything...or if I waited and did it later, felt like I was getting off a little too late. Plus, my one off day I week I felt like garbage b/c I wasn't dialyzing at all.
I'm not sure what your situation is...but if I wasn't working...I might have stuck with it. As it stands I like being able to walk away from at the end of my MWF shifts and not having to see all that junk in my house all the time. Plus 4 off days a week is quite a bit nicer than just the one.
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I think that it is an individual thing. I live alone in a tiny NYC apartment (supplies are my biggest headache), I work full time +, and I only dialyze 5x a week. I feel so much better on NxStage - I couldn't imagine going back in center. But everyone is unique. I blogged my training diary in the thread "NxStage Training Starts" My experience is all there, the good, the bad and the bloody.
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Negatives - it does take up time and space. I do 5 days a week, not 6, so that helps a little on the time. You have to deal with getting the lab work done on a weekly or bi-weekly basis. Talk to your center to see how they handle it - some systems are worse than others. You need a partner to get trained at most centers, and they don't want you to do it without the partner there. (It's possible, and plenty of people on here do it by themselves - it's just that many centers won't let you train without one.) If you do have a partner, you have to consider that you are taking up their time as well as your own. You have to learn to access yourself - which means needles for most people. (Getting stuck is still my least favorite part, even if I'm doing the sticking.) There is inventory to keep track of, monthly water samples to send in, supply orders to place and receive.
For me, the positives far outweight the negatives, though. My center is an hour away from where I live. Now I only drive there once every two months for a clinic visit with the doc and staff. With the gas prices going steadily up, that's worth any hassle I have to deal with right there. I no longer have to adhere to the center's schedule, either. I can rearrange my schedule any time I need or want a day off. I can also change the time I hook up. If I want to go to a party in the evening, I just dialyse in the morning or afternoon. I can drink more fluid, since it comes off nearly every day. I can eat whatever I want for the most part - the potassium is no longer an issue, and the phos, thanks to a good binder, hasn't been a problem either. My chair is more comforable than the center's version. I have a little heater right next to my machine, so I'm never too cold or too hot. My room is never too noisy; I never have to listen to another patient getting sick or using the portable potty next to me. I can use my cell, call my friends or have them call me, have company, do craft projects that take up lots of space, eat without being lectured, and quit early if I need to without having an argument and signing silly forms. I get fewer colds now that I'm not spending my time surrounded by the other patients and nurses. I never have to wait for my chair or wait for a nurse to disconnect me at the end. I don't have to crash while the nurse is fiddling around waiting for a bp reading before she can give me saline either - if I don't feel good, I can do something about it immediately.
Most of all, I feel better - more energy on a daily basis, and no washed-out tired feeling after dialysis. it's worth every bit of time and energy to me!
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yeah...what jbeany said!
I've been on home hemo for 1 year now, and despite the hassles, I wouldn't go back to center. I have way more time with my family, the opportunity to continue working fulltime, control of my schedule (I'm 5x a week), control of my environment, less restrictions on diet and fluids. Yes, the scheduling is a pain and yes, timewise it's pretty overwhelming (I'm on the machine about 4 hours), but I remember how I felt after in center treatments and I've never felt that bad after home...it seems gentler, my wife sticks me so I know what to expect every time, we have a comfy coucy and a big screen TV. I can now do everythnig with the treatment except the stick...and maybe, someday, I'll be able to do that too.
It's a personal choice, but home hemo has made all the difference to me.
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Now, if I can just find a wife.
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Flip,
A very wise man once told me that "it is better to wish you were married, than wish you weren't".
But, on another note, have you looked into doing NxStage solo? I trained solo and I dialyze without a partner, as do others. If you feel comfortable and hemodynamically stable, it may be worth looking into.
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we do 3 on 1 off - unless something comes up and then I will stretch to 2 on 1 off. And yes it does take a lot of time husband is on ~2.30 hours but I plan for 4 hours each night, setup, run, cleanup. so you can do dialysis anytime as long as you plan for a 4 hour window. He feels much better with more energy. well established button holes are a must for home dialysis and will make training quicker. There are a lot of supplies and they do take up a lot of space. We use the bags and reading the problems with the pureflow we will stick with the bags. we never have to cancel a treatment because a batch fails and do not have to do the water tests that sound so complicated. Good luck on your training and enjoy being at home
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Marvin does 6x week on home hemo (NxStage). He's much, much, much, much healthier since he's been on it (one year in July) than when he was in-center (12 1/2 years). We schedule his treatments around the rest of our daily lives. Today, we might dialyze at 7 a.m., tomorrow might be 9 p.m. We have done treatments at midnight! It's the freedom to choose that we like so much. We are in control! (Marvin doesn't work, but I do -- so we have to work around my school schedule -- it's summer now, and I'm out of school, so that's really, really nice)
There are some negatives (space, time ordering supplies, time setting up/breaking down, etc.), but like jbeany -- the negatives are NOTHING to us compared to the positives!
For Marvin and me, home hemo is GREAT! (I do think it's a matter of personal situation and choice, though)
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I was told that I couldn't train solo and that I must have someone present each time I dialyzed in case something happened.
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I think it depends on your center flip. some will allow you to do it solo. I know of a man in Alberta, Canada who was using a Gambro machine (I think) and he was solo.
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I was told that I couldn't train solo and that I must have someone present each time I dialyzed in case something happened.
I did it solo for a year flip. But I had to purchase and pay monthly for a lifeline hookup to my phone line...and had to have the bracelet nearby when dialyzing.
Seeing as I didn't even have a regular phone line at the time (I just use my cell) I was paying about $40 a month extra for the phone and lifeline service...another reason I didn't stick with it very long.
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Wonder if I could talk one of the nurses into shacking up with me? Just a hillbilly thought.
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Of course she will Flip, once you turn on the charm and ply her with bourbon. :rofl; She just may not want to dialyze you on her off-time.
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I was hoping to do like Earnest T. Bass and "woo her with my ways"
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Neo, Otto is going in tomorrow about nxstage, his Dr is REALLY pushing Otto to try it since he's so young he feels it will give Otto his life back. They can get him in next week to start training so I'm supper excited for him. He's stoked about being able to choose when he can be on. He's also wanting to have energy to be back on the dirtbike >:( but I just want him to feel good again and HELLO more energy >:D
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I have a really dumb question. Maybe Bill or someone else that's really up on this stuff can answer.
Can a NxStage be used by more than one person? Could two or three people travel and take one machine? or could two patients also be each other's caregiver and use the same machine for back to back dialysis?
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I think anyone who is capable should try NxStage. I've been on it for a year and I love it. Unfortunately I'm saying goodbye to it because I'm going to be living alone in a few months and they won't let me do it alone. I only have five treatments left on NxStage, then I'll be done with my PD training. Compared to any kind of in-centre dialysis, NxStage is THE BEST! I'm going to like PD, but I'm really going to miss that little white machine next to my bed. If NxStage is available, GO FOR IT. :2thumbsup;
Adam
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There have been several who have posted in another thread who do it alone. Maybe you could change centers or something.
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flip
on the internet the other day a lady is selling her house and she comes with the deal
she has long blonde hair and it not fat or ugly
her house is nice
it might have been the day I found the pigmy snake or the soccer catfish
I thought about you when I saw the infomation
kind of reminded me of O'karol ( her looks)
was going to tell Sluff but I think he is married
-------- might be a shot at love------------ if she likes your pets
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Sounds good, but how is she at cannulating? :rofl;
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so I would have to buy her house in order to get her?
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No, I think you buy her and the house is thrown in for free. What does Twirl say? She saw the ad.