Must you have a partner for nocturnal HD or can it be done alone. Does anyone here do their own HD.
So maybe if you do have to have a partner when you start can you eventully go it alone.
Another question I have is can the patient choose what machine they would like to use & is one machine easier to use than another.
Jane
I am on nocturnal and although I live with my fiance, I do everything myself. I do get him to turn the light off for me before he goes to bed, but thats about it!
I think all the machines are much the same (well ours are), there are just a few little things that are different, and some of the maintenance may be different. I just went on the machine I was put on, didnt bother me which one it was. I only have one problem with my machine, the alarm is more annoying than the others!
Although most dialysis providers require patients to have someone available while doing dialysis, when doing nocturnal dialysis, even those partners are asleep. I know patients whose clinics allow them to do nocturnal dialysis alone because otherwise they wouldn’t be able to do home dialysis at all. I’m sure that the clinics evaluate each situation on a case-by-case basis and determine who they believe will be safe doing their treatment alone and they make sure that those patients know who to call if they need help.
There are many threads that discuss what patients believe about which machines are easy-to-use so I’d suggest you search the threads for these evaluations. You might search the threads for the names of the machines (if you don’t know them, see the section of this website that discusses equipment).
Patients can have some input in what machines they use. Their requests for specific machines have encouraged clinics to consider those machines. However, clinics establish contracts with specific machine makers and use the machines from the companies with which they have contracts. Some clinics have contracts with just one company while others have contracts with several. The more patients that a clinic has who want home hemo, I would expect patients to have more options. So if you want specific machines, encourage your fellow patients to consider and ask for home hemo.
I don’t live alone, but I trained to do my hemo alone, and I do it totally by myself without any assistance. I personally don’t see what having a trained partner would add, except maybe to help put me on when I don’t feel like it. At night makes no difference whatsover, since the partner would be sleeping the same as the person on dialysis.
I’m on the machine my unit uses, period. They are set up for it, to train on it, to maintain it, etc., and when I do have to go in-centre occasionally, I like the fact that it’s the same machines. Timely maintenance is probably the most important aspect of it. I really don’t care what machine I’m on, as long as it does the job. If home dialysis started to cost too much, they wouldn’t offer it at all, so, I’m not complaining.
Pierre
I was trained to be able to do it alone if need be but my husband and I have been "soulmates " for nearly 30 years and there was no way he could let me go through it all without supporting me where he could. Whoever gets to Freni first sets her up, I do needling of course, he likes to do the taping (he is neater than I am), he brings me cuppas, does the lights, comforts me when I need it during the long nights and helps me off in the mornings. I luv him to bits. 8)
We had the choice of Gambro or Fresenius. Was told Gambro was a bit noisier and more alarms and has a a big base so I couldn’t have it in the wardrobe.
Though I trained with my father who agreed to be part of my life I really needed him you know. :oops: …The bad carpal tunnel, nerve pain, and weakness on arriving for training made me unfit to do it alone. 
However, very surprising indeed that after several months I’ve gained some energy back that now I do all of it alone while family just stands by. 
Now if I ask would I be able to do this completely alone without supervision, perhaps yes but would I? Maybe not, I’d rather be around people. :roll:
AH yes, the turning off of the ‘big’ light ! 
That’s the only thing my wife does- she usually comes in a couple of times to ask if I want anything, before turning in herself.
I trained alone & do it home alone. My wife is partially disabled herself, plus she works full time as a teacher and earns more than I do (on basic salary - I used to get another $10k+ from doing ‘on-call’ & o/t).
Now I only work 3days & she has cut to 4, per week. SO we’ve dropped a good few grand between us, but are still more than O.K.
When I started on daytime @ home, I was going on after she’d left & coming off before she got home, so she wouldn’t have been of any assistance. She couldn’t afford all that time off when I was training either. So basically it was obvious for me to be doing it myself. One of the reasons I got the Fresenius too, I think.
My other half couldnt take time off work for the training either. They need him there, so days off are either RDOs or their set holidays. I think he is quite scared of the machine and what not, as he doesnt come in very often while im on :?
I have several part-time caregivers. One of them has a fear of blood…great, right? I wasn’t so crazy about blood either before I went on dialysis. It definitely took some getting used to. I was surprised how quickly I got acclimated to all the sights and sounds in dialysis, because I’ve never been too comfortable observing blood, guts or sick ppl. You know how it is in dialysis- it’s nothing to see a bunch of blood squirt all over the place-just everyday stuff lol.
How have your caregivers adjusted to seeing you do dialysis at home (speaking to everyone)? Do they understand the importance of being around in case you have an emergency? How do you involve them and elicit their support without burdening them?
I think I’ll move this to a new thread so please post over there.
Oh never mind, I’ll leave my post here as I see the topic fits
My hubby was as traumatised as I was at the whole process but insisted on being part of the training when he could. He is retired due to back problems so time is not an issue for us. We are both much calmer now, but when things go wrong I tend to fall to pieces and he picks me up. I think putting Freni away in the early hours, we tend to be able to “normalise” our relationship for a while. As for realising how important it all is, he is up like a shot (even if he is snoring his head off the second before) the minute an alarm goes. I realise I am very lucky to have his support, but then hey, I know I would be doing the same for him). In fact, I have, he has had several back operations and been in intense pain often, where I have been his support without question. 8)
I really appreciate this thread. My mother will soon be starting dialysis. She lives alone, my sister and I both multiple hours away. I appreciate the responses of those who live with someone and/or trained with someone, but still essentially do most of the dialysis themselves. But please, what do you all think about someone doing this while living alone? I will be taking the necessary time off work to live with her when she starts, whether at home or in a center, but I’m still worried about her being alone in the house while doing this. (She is particularly interested in the night-time version, sorry I don’t have the jargon down to know the name of that)
Am I being too over-protective, or is this a serious concern?
Thanks for your input.
– Sarah
Sarah, it’s really going to depend on the program (many don’t permit self-dialyzing at home) and on your mom. What she wants to do is called nocturnal home hemodialysis (NHHD). You can read about it at: http://www.homedialysis.org/v1/types/nhh_01.shtml. NHHD is a very slow, gentle treatment that is easy on the heart and only very rarely causes problems like drops in blood pressure that would need to be dealt with immediately.
The biggest possible risk of NHHD is bleeding if the needles come out or the tubing comes apart. To prevent this, special connectors are used. And to detect it instantly in case the special connectors don’t do the trick, many (all?) programs have people use bedwetting alarms, which wll go off if even one drop of fluid touches the sensor pad. Some programs also do remote monitoring over the Internet and call 911 if someone runs into a problem. From what I’ve heard, this makes people feel better, but isn’t really necessary, and we’ve not been told of a single incident when it was actually necessary to call 911. (This doesn’t mean it hasn’t happened–just that we haven’t heard of it).
Another often overlooked risk of NHHD is if someone who is doing it takes a vacation somewhere else and switches to regular, 3x week in-center hemo without also switching to an in-center hemo diet (which is MUCH more limited). I have heard of one person who died after his potassium got too high on vacation.
I was told a partner was a NYS requirement. Not a decision the center could make. If a nocturnal patient is monitored then the state considers that person as having a partner even though your in the home alone.
Interesting, Marty–a virtual partner! If Internet monitoring allows folks to do NHHD, I’m all in favor ot it. That’s actuallty the best reason I’ve heard for Internet monitoring.
Virtual partners sounds like a plan…I have broadband connection…all I need is a web cam then now I can be doing dialysis all alone while beeing watched by virtual partners! Imagine a chain of online home dialysis partners doing dialysis the same time I do and all of us are watching each others backs!
So many questions.
Isn’t this a solution looking for a problem? What situation will this address exactly?
I can only imagine my Mother in Chicago staying up late and sounding the alarm every time I nod off after a long days work. And who exactly is she (or Gus or whomever) suppose to call? I would imagine the first call should go to me and then one of my neighbors? Or Seattle 911? What could possibly have happened for them to be in time to rescue me?
smcdaniel I don’t know if your mother could dialyze herself, but if she is able to self-dialyze and wants to, then I think she should be able to make that decision for herself. Why should dialysis, per se, take away a person’s autonomy?
If there really is a need to monitor us dialyzors then why not just have us call someone and have a continuous conversation during treatment.
Me : You Okay?
Gus: Yup. How you doing?
Me: Okay so far. You still okay?
Gus: Yeah, still okay. How about you? …
This would also allow me to be continuously monitored for stroke, which would be better than incenter because there they usually leave the dialyzors alone.
Of course there would have to be a double blind study to determine if the benefit of tele-partners is outweighed by the increased risk of being bored to death.
Bill, I totally agree with you, it should be a patient decision. The only advantages I have ever ran into being monitored during the night were:
If you forget to turn the heparin on and fall asleep that’s 8hrs without heparin not usually good. So the center calls us and says turn on your heparin. If you forget to thread the air detector alarm, they also call.
And they usually check that your goal is put in correct. I don’t think this would have much of an impact if you were awake during dialysis, because you would catch it. But once you fall asleep there is no chance of seeing the mistake until the next morning. I forgot some patients have fallen into such a deep sleep that they don’t wake up to respond to an alarm and the center has to call them.
I don’t think any of these things happening are reason enough to insist on monitoring or not letting patients dialyze without a partner if they want too. To me the monitoring is just a perk.
There’s nothing wrong with dreaming about dialyzing alone and this thread alone helps brainstorm ideas on how dialysis machines can be made better…am sure the next generation dialysis machines can be made smarter in that they will be able to remind/alert patients when they forget to setup their heparin or any other small details during treatment.
My invision for the next generation home dialysis machines is just that, the ability to dialyze without a partner, in addition of wireless technology that can automate recording and communication between the patient’s home and clinic…all through internet access.