I am very glad I initially copied and pasted your post from ihatedialysis.com over to here, Hemo Helper, as I could see you were not getting too much of a response over there and I wanted to generate some help for your predicament. As you said, new machines don’t have ample support from other users at first, and for that matter, we don’t have that many home patients over here that are using NxStage, either, out of the 1000 NxStage users. But we have a few pro-active patients/helpers and I hoped if everyone here put their collective heads together a solution would turn up for you, and for us, too, should we encounter the same, or similar, problem.
The way I see it, the few machine companies for home hemo have a monopoly. They need our business, but we need them much more. One would think that NxStage monitors this board to see what patients think of their machine’s dependability. Wonder why it is taking so long for them to address Hemo Helper’s concerns? He has been a real gentleman trying to help them out. So, why are they leaving him in the lurch with this ongoing problem? It is one thing to provide customer service and it is another thing to REALLY provide customer service, checking back to make sure customer problems have been resolved.
One thing is for sure-good training is essential, and I think one must realistically be told ahead of time how often to expect alarms in the middle of the night. I read where Lynchburg said their nocturnal patients can expect an alarm once every 10 nights. That would be liveable, but what Hemo Helper is going through is not.
I hear what NxStage technical is saying to do to correct alarms. But the question should be, WHY are the alarms occuring and is there anything one can do to prevent them when it comes to set up technique? It sounds like either NxStage has not perfected the alarm problem when it comes to nocturnal txs, there is a problem with his specific machine or cartridge, or something has not been conveyed to him about ways to adjust the set-up. Having to call techincal support in the middle of the night for a problem like this should not be an ongoing thing for a patient or helper.
I am glad for the info. you shared, Hemo Helper, about the default settings. I had wondered about that and agree it is something that the patient should have a record of. I am of the school that the more the patient/helper knows about the machine/tx, the better. I am for anything that assists the patient/helper to become fully educated. I have had some medical people laugh and say one can’t trust info found on the net, but I told them I totally disagree. I will take info no matter where it’s from as long as it’s accurate, and I do check out ALL info whether I get it in person, or on the net.
As far as I’m concerned, real education is taking place here on this sujbect of alarms since this thread was started and that is what I like to see occur. And, it’s an interesting dynamic that when someone has a machine issue and is stuck at first, with everyone helping, so many good things come out of the mix for everyone. Like I said, I hope by helping Hemo Helper many more will be helped when/if the same sort of problems happen to them.