I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: jbeany on October 14, 2006, 04:18:20 PM
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I've been looking at the website, and reading the posts from people on the NXStage, but I haven't found any mention of it. Epoman's training mentions being taught what to do if the power goes out while you are hooked up, but what do you do if it goes out and stays out for days at a time?
I live in Northern Michigan, and we lose power a lot in the winter. We don't just get break-out-the-snow-shovel storms; we get call-out-the-National-Guard storms. The kind of snow where the basketball hoop disappears under a drift and you have to climb out the window on the second floor because all the doors are blocked off. I know the local power company has a program that lets people with life support systems register to be first for power restoration, but that could still be days if the weather is bad enough. And even if the NXStage is portable, if the weather is too horrible for the power company to get things fixed, I'm most likely going to be snowed in at home as well, and unable to get out to somewhere with electricity. Can I run it off of something small, or do I have to figure out how to squeeze the money for a gas-powered generator out of budget that is already pinched so tight it's gasping for air?
And maybe this should be a separate topic, but if my hubby gets snowed in at work, is it possible to do the dialysis by yourself? (At least if I get over my squeamishness about sticking myself, but that's another problem.) I know all the reasons not to - you might pass out, etc. But if the choice is self-dialysis or missing a treatment because I'm stuck here by myself, is it possible to run the set-up without help? :thx;
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Good question! And what a good reason to have access to NxStage, in case you aren't able to leave your house.
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I've been looking at the website, and reading the posts from people on the NXStage, but I haven't found any mention of it. Epoman's training mentions being taught what to do if the power goes out while you are hooked up, but what do you do if it goes out and stays out for days at a time?
I live in Northern Michigan, and we lose power a lot in the winter. We don't just get break-out-the-snow-shovel storms; we get call-out-the-National-Guard storms. The kind of snow where the basketball hoop disappears under a drift and you have to climb out the window on the second floor because all the doors are blocked off. I know the local power company has a program that lets people with life support systems register to be first for power restoration, but that could still be days if the weather is bad enough. And even if the NXStage is portable, if the weather is too horrible for the power company to get things fixed, I'm most likely going to be snowed in at home as well, and unable to get out to somewhere with electricity. Can I run it off of something small, or do I have to figure out how to squeeze the money for a gas-powered generator out of budget that is already pinched so tight it's gasping for air?
And maybe this should be a separate topic, but if my hubby gets snowed in at work, is it possible to do the dialysis by yourself? (At least if I get over my squeamishness about sticking myself, but that's another problem.) I know all the reasons not to - you might pass out, etc. But if the choice is self-dialysis or missing a treatment because I'm stuck here by myself, is it possible to run the set-up without help? :thx;
First off, yes, it is possible (but not reccommended) to use the NxStage by yourself. Bill Peckham has done so and blogged about it. The "Buttonhole" method may solve the problem of sticking yourself.
As far as using NxStage w/o power, as nurse posted on another board that she addressed this problem with a NxStage rep and he said yes, you can use it with a gizmo which stores power (can't remember what they're called -- some of the guys here probably know) which can be recharged using a generator. BUT, if I recall correctly, one large enough to power the NxStage costs about $3,000. I don't recall the electrical parameters (watts/AMPS, volts) but I think they were so limited that the normal electrical fluctuations of a small generator may preclude it being hooked directly to a generator.
Yes, if you notify your electric provider that you are a dialysis patient they will put you on their priority list and you will be one of the first to get reconnected as power is restored; when that is not feasible you and your PORTABLE machine can be rescued and taken to the closest source of power. Being cautious with your diet and fluid intake if a storm is coming can buy you a few days -- not a pleaseant thought but could be better than the alternative.
When we visit the first time I'll see if there are tech manuals with the power specs available at the clinic. Epoman may already know, so let's see what he says.
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Input power is listed at 600VA (200VA for cycler; 400VA for AC outlet) You could run the cycler without the warmer if the dialysate were already warm and then you are only looking at the 200VA draw. (Probably not recommended though, but in an emergency situation where you know you aren't going to be able to dialyze for a few days, I would probably try it)
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thanks, bill - I can run those specs past my father-in-law, the mechanical genius, and see what he can come up with for a generator source that would supply that.
($3000 for one from the company - somehow I doubt my insurance is going to cover that. . . . ;D)
I'll have to search and read the blog about do-it-yourself home hemo - sounds like useful info! Unfortunately, I have a graft, not a fistula, so no buttonholes for me. . . :P
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I am on CCPD and if we lose power i have the option to do my exchanges manually :thumbup;
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In your case I would be looking at some form of PD with manual changes during an outage or an emergency power source for your home. If that can't work then in-center dialysis or a plan to get to a dialysis center temporarily should be in place if you have frequent outages. It really doesn't sound like you live in a great place for at-home dialysis. What if there was a medical emergency while snowed in and with the power out? Is moving an option? I'm wondering if there might be a state program that would pay for a backup power system. For your situation I could see either a hot standby whole house generator or a full blown solar package with panels charging batteries that would in turn power an inverter providing normal AC voltage throughout the house. If reliable backup power can't be arranged then moving might be the best option. I like the idea of doing dialysis at home but medical help needs to be close by and always available to make it a reasonable option.
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No, moving isn't an option, not that it would solve the power outage problem anyhow. All of Northern Mi has blackouts during storms, even the bigger cities - it's just part of life around here. And being far from medical assistance in an emergency is the norm in the area as well. (My emergency medical team, however, is in-house. My husband is an EMT. He has does volunteer runs with one of the local ambulance services. They serve two entire upper peninsula counties. Even in good weather, driving as fast as they can, it's not unusual for them to take 45 minutes to an hour to get to the location.)
PD isn't an option either - not highly reccomended for brittle diabetics. I have enough trouble with my whacked-out blood sugar without pumping liquid sugar directly into my gut. Add in my gastroparesis and double the fun. . . I already qualify for the "Contents Under Pressure" t-shirt one of the posters suggested for Epoman's t-shirt collection, without adding bags of fluid to the mix. :P
The point of wanting to do home hemo was to not have to rely on being able to go to the center. The closest center is an hour away in good weather. I'm far more likely to miss treatment if I have to drive that distance three times a week during the winter snow.
My father-in-law runs a small engine repair business about a block from my house. I just found out today that he has a little generator there he uses for some of his work. It wouldn't be big enough to power the whole house, but it might be strong enough to run the dialysis machine. Going to get specs on it and see if I would need an adapter or anything else to use the NX Stage with it. It would be a cold hike with a 70 pound box on a sled, but it would beat getting sick from skipping the treatments. (Keeping sterile while doing dialysis in a grease-soaked workshop . . . hmmm. . . okay, I'll just have to figure that out later - I can only handle one problem at a time!)
Maybe I just better hope for a mild winter. :)
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No, moving isn't an option, not that it would solve the power outage problem anyhow. All of Northern Mi has blackouts during storms, even the bigger cities - it's just part of life around here. And being far from medical assistance in an emergency is the norm in the area as well. (My emergency medical team, however, is in-house. My husband is an EMT. He has does volunteer runs with one of the local ambulance services. They serve two entire upper peninsula counties. Even in good weather, driving as fast as they can, it's not unusual for them to take 45 minutes to an hour to get to the location.)
PD isn't an option either - not highly reccomended for brittle diabetics. I have enough trouble with my whacked-out blood sugar without pumping liquid sugar directly into my gut. Add in my gastroparesis and double the fun. . . I already qualify for the "Contents Under Pressure" t-shirt one of the posters suggested for Epoman's t-shirt collection, without adding bags of fluid to the mix. :P
The point of wanting to do home hemo was to not have to rely on being able to go to the center. The closest center is an hour away in good weather. I'm far more likely to miss treatment if I have to drive that distance three times a week during the winter snow.
My father-in-law runs a small engine repair business about a block from my house. I just found out today that he has a little generator there he uses for some of his work. It wouldn't be big enough to power the whole house, but it might be strong enough to run the dialysis machine. Going to get specs on it and see if I would need an adapter or anything else to use the NX Stage with it. It would be a cold hike with a 70 pound box on a sled, but it would beat getting sick from skipping the treatments. (Keeping sterile while doing dialysis in a grease-soaked workshop . . . hmmm. . . okay, I'll just have to figure that out later - I can only handle one problem at a time!)
Maybe I just better hope for a mild winter. :)
You are a problem solver. I love your perseverance. :clap;
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I would think that you could wire a special outlet that isn't wired into the rest of the house. Just runs out to the shop to hook up to the generator in case of an emergency. Let the generator run in the shop while you dialyze in the house. Most problems are only problems if you don't plan for them. It sounds like you are set to handle anything that comes up.
Good luck
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I don't think a machine is going to like a power interruption in the middle of a run. The backup power has to cut over automatically with little or no interruption. Now I'm thinking a UPS with enough capacity to handle the dialysis machine for a few seconds/minutes until a generator comes up might be the answer. A patient hooked up to the machine and likely alone in the house isn't going out to the garage to start a generator. It must be an auto start/auto transfer arrangement. I still think that under the circumstances this is a risky proposition.
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She asked about running by herself if her husband gets snowed in, but I read that as a separate question. No, I don't think you need to run alone, and I don't see a generator as a good option if power goes out while you are on a machine. But, if I read the question corectly, you are asking about long power outages where the power is out and you need to dialyze. In that case, Hubby goes out to the shop and fires up the generator and plugs the Nxstage into a outlet that is already run to the house and hardwired in for just such an emergency. This keeps you from going 2 or 3 days without dialyzing while the power company is working to get power back on. I think that would work pretty well for an emergency plan. $500 or $600 for a generator and wiring should do it. Maybe clear that with Nxstage first though.
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BUT, if I recall correctly, one large enough to power the NxStage costs about $3,000. I don't recall the electrical parameters (watts/AMPS, volts) but I think they were so limited that the normal electrical fluctuations of a small generator may preclude it being hooked directly to a generator.
Back up batteries are probably your best bet. Though they are limited in the time they last (maybe 8 hrs), a generator could cause you more harm than good. The power coming out of a generator is not consistant and fluctuates up and down quite a bit. The machine power may cut on and off or it's possible you could do damage to your NxStage machine with these fluctuations and not be able to dialyze period. You may be able to charge back up batteries with your father-in-laws generator, but I don't think I would hook directly up to it.
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Wouldn't a surge protector protect from the fluctuations from the generator?
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Wouldn't a surge protector protect from the fluctuations from the generator?
Yes it is possible that it would prevent it from harming the machine, but I wouldn't stake my house on it without proof. I don't know the requirements and specs of the NxStage unit, or those of the generator. Even with those I would be reluctant to say, to many things could happen. It wouldn't help any though if the power went below what the machine needs to operate causing it to go on and off with the fluctuations.
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We have a generator that automatically starts in 1min and 15sec. of an electrical outage. It runs for at least 1/2 hr. If the electric returns in that time it will automatically shut itself off. It self tests itself once a week. When buying a surge protector we got one for high and low voltage.