I just had an interesting idea

[Adam_W]

I've been back on hemo temporarily because of some PD problems, and a big issue of mine is not being allowed to dialyze alone. That is one of the main reasons I've switched to PD (trying to, anyway), because I'm not "allowed" to dialyze solo even though I'm comfortable doing it (don't tell my centre, but I'm dialyzing alone right now, and I'm just fine). The main reason they tell me I can't dialyze alone is who would help me if I passed out from low blood pressure. I came up with an idea for an "alerter" that would make that situation safer. It actually came from my lifelong interest in trains. Modern diesel and electric locomotives have an alerter in the cab that sounds a warning every 30 seconds, and if the engineer doesn't hit a button to reset it (or moves another control in the cab), it automatically applies the brakes and stops the train. I figured something like that could be linked to 911 through the phone lines (like the life alert buttons), and it would sound the warning ever 5 or 10 minutes, and if the patient doesn't reset it, paramedics would be sent. It would obviously not work with solo nocturnal (who would want to try to sleep with an alarm going of ever ten minutes), and it could get kind of annoying for some people (it wouldn't bother me), but it would provide a level of safety that might allow more patients to do hemodialysis solo. Just an idea I thought I'd share.

Adam

[flip]

It sounds like a good idea since most machines have an alarm anyway. I think it could be incorporated into the Medic Alert system where they would call and, if the call isn't answered, dial 911.

[oleboy]

Super great idea and using a Medical Alert Co. they would have data and info on the patient and could alert other family members after calling 911. It could be a marketing tool for them.

[CW]

Sounds like a great idea - one issue though 5 to 10 minutes is more than enough time for a serious emergency to kill you (heart attack, blood pressure crash etc.

[G-Ma]

or have something like my sons have in their office...a charlotte dispatch phone that only rings if there are charlotte wrecks that they have to know about, otherwise the phone sits there with the safety feature being if someone holds you up, just knock the receiver off and phone immediately rings to 911 and dispatch depending on what they hear sends a squad out.  Couldn't that be a courtesy phone in a patients home?

[KICKSTART]

I really dont know about 'crashing' because i do PD. Although it sounds good in theory , there are 2 things to think about if you are doing hemo ?  alone. Firstly if you had someone there is there anything they could do to quicken your recovery if you crashed? ( i dont know how you recover?) Secondly would the emergency services get to you in time ? While im all for doing my own thing , i dont think i would like the thought of crashing and being on my own hanging over my head every time i did dialysis ! I dont think this is about your ability to cope on your own , but more of a safety issue.

[IUNurse]

Hemo can be very dangerous, a patient can crash in a matter of seconds and you would be too out of it to stop it.  And what if your needle came out and you didn't know it?  Paramedics are not fast enough for these emergencies, but I know people do it- I pray for your safety!

[G-Ma]

NXStage pushed it through to basically get me trained to be "independant" as far as doing my own hemo dialysis as long as I dialyise with someone else there for the safety issue...so if I am someplace else visiting I just need to make sure another person is with me and knows the numbers to watch for and dial 911...anything that happens I guess will happen.  NXStage states they want patients to be trained on a case by case status and not lumped all in one box.  Some type of alarms are a good idea and hopefully at some point NXStage will make that a part of an upgrade even though it perhaps won't give rescue enough time to get there if someone is alone.  From things the NXStage trainer said today something being worked on will take the place of us writing and sending logs...ooohhh that would be so nice I think.

[Meinuk]

IU nurse, you are going to have a lot of praying to do.

There are many people using NxStage alone. (four in my unit alone) I trained alone, and other than dialyzing in front of a reporter and photographer, all of my runs are done alone.  I am alone right now as I type this one handed while dialyzing.  I am hemodynamically stable and I also have a life alert collecting dust next to my mayo stand should I need it.

People who have kidney failure are individuals, with individual medical histories.  A person can be trained to be proactive in their treatment and live a healthier life on home hemo wether alone or with a partner.

IU Nurse, you work in a unit that supplies the MINIMUM dose of dialysis.  Please understand that home hemo has come a long way, and that daily therapy is nothing like standard in center hemo with regard to fluid balance.  Please read more here on IHD about NxStage - before creating such drama about solo dialysis.  It is a risk, but if a person is educated and medically stable - it is not life threatening or unsafe.  You can't compare daily home hemo to what you experience in center.

Finally, Adam, the final solo call is up to your unit & medical director, as time goes on, they may come around.  Do you have any in center nocturnal units around?  Tlhat is becoming quite popular now that so much good data is being published.

[flip]

Well said, Meinuk. I love you more than ever. I'm getting ready to do a solo act on NxStage as soon as I can get it approved. I think it all depends on the patient and how well they handle the dialysis process. Maybe you can help guide me through the process.

[Adam_W]

IU nurse, you are going to have a lot of praying to do.

There are many people using NxStage alone. (four in my unit alone) I trained alone, and other than dialyzing in front of a reporter and photographer, all of my runs are done alone.  I am alone right now as I type this one handed while dialyzing.  I am hemodynamically stable and I also have a life alert collecting dust next to my mayo stand should I need it.

People who have kidney failure are individuals, with individual medical histories.  A person can be trained to be proactive in their treatment and live a healthier life on home hemo wether alone or with a partner.

IU Nurse, you work in a unit that supplies the MINIMUM dose of dialysis.  Please understand that home hemo has come a long way, and that daily therapy is nothing like standard in center hemo with regard to fluid balance.  Please read more here on IHD about NxStage - before creating such drama about solo dialysis.  It is a risk, but if a person is educated and medically stable - it is not life threatening or unsafe.  You can't compare daily home hemo to what you experience in center.

Finally, Adam, the final solo call is up to your unit & medical director, as time goes on, they may come around.  Do you have any in center nocturnal units around?  Tlhat is becoming quite popular now that so much good data is being published.

Very well said. Obviously there are some risks involved dialyzing alone. Shoot, there are risks involved with dialyzing in a room full of nurses. It is a significant medical procedure, and unfortunately things go wrong. I feel as long as the patient is constantly aware of what's going on, then that lowers the risk considerably. I've crashed enough times in-centre, that I know EXACTLY how I feel when a crash is coming. No one knows our bodies like ourselves (and God), and we can tell when something is "not right". It's kind of the same deal with the risk of a needle coming out. As long as the patient is paying attention to the treatment, and how they feel, they are going to know if a needle has come out. I haven't mentioned this for a few reasons, but I did once have a crash "sneak up on me" while I was dialyzing alone. I didn't pass completely out, but I was kind of loopy for a while. Even then, all I had to do was open one clamp, and I had saline coming into me. I ended up infusing more than I would have done normally and I had to take that extra fluid off the next day, but that was the only problem. Simply opening one clamp that took me maybe two seconds to do, and I ended up being perfectly fine. Like Meinuk said though, short daily and nocturnal hemo are waaaaaaay different than in-centre treatments, and incidents like that are very rare. Obviously some people are unable or unwilling to dialyze alone, but for those of us who can and want to do solo hemodialysis, I feel we should be allowed to do it.

Adam

[carla13]

Hi,

i've been put on HD after having a recurring infection, and I too am frustrated about having what i see as my independence taken away. I would love to dialyse at home again, but there don't seem to be the resources for it here in the UK. i'm also hoping to return to PD sooner rather than later. I think if a patient has the wits to do their own dialysis at home it should be allowed. Obviously if you are suffering from any other conditions it may not be a good idea, but that would be decided between you and your team. I think an alarm or alerter is an excellent idea, giving those people who want it their independence and freedom to manage their own treatment.

xx

[Bill Peckham]

What do you all think of this? This is from the latest newsletter of the Northwest Kidney Centers. I don't think my dog would cotton to some show off golden retriever coming into the house but maybe down the road I'll try this out. Right now i dialyze alone over night; I've been dialyzing at home alone since 2002. Meinuk, right as always. Dialysis alone is nowhere near as dangerous as under treating CKD5 with a three day a week dialysis dose.

[paris]

Thank goodness for people like Bill and Meinuk that dispell myths and give us hope for independence.

[jbeany]

It's an interesting thought, Bill.  Too bad I'm allergic to dogs!
I've barely managed to train my cat to stay out of the room while I'm hooked up - I can't see training her to respond to the alarms by calling 911. . .

[flip]

Out of curiosity, Bill, which machine do you use?

[del]

When doing nocturnal dialysis like my hubby does there is very little chance of crashing.  The treatment is so long that very little fluid is being removed at a time.  It is also gentle on your body because of the low pump speed and dialysate flow.  As for needles coming out also a very, very slim chance. With the way they are taped into hubby's arm I cannot see them coming out. He wears a moisture sensor on his arm and there is a moisture sensor on the floor next to the dialysis machine and one under the ro and one on the floor by the water inlet into the bedroom.  Some people in Canada are hooked to a monitoring system through their phone line.  A lady I know in BC is hooked to a monitoring system.  If something happens they call her house if no answer they call 911 for her.

[flip]

I was just curious if NxStage will soon be appoved for nocturnal. Davita tells me it's because it doesn't have a heparin pump.

[Meinuk]

Flip,

Bill is doing nocturnal with NxStage using a heparin pump.  Technically,  it is called extended treatment, because NxStage has not been approved as Nocturnal (government hoops to jump through).  If you read his signature line, he posts his settings.

And don't worry,if you switch to nxStage,  we plan on being here to cheer you on and talk you through the process - just like everyone did for me last year.  I couldn't have done it without the support I got from everyone here.  So, even though I am dialyzing solo, I never really feel alone.

[flip]

At first they told me I couldn't do it solo. After I told them I knew a lot of people who were, they decided it was okay as long as my nephrologist approved it.