I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Hootie on March 05, 2015, 01:48:18 PM
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Anyone use a fill in caregiver when the husband caregiver needs to go out to town for a long weekend or a trip? Obviously, one needs to know the NxStage system and how to stick....Dialysis hemo nurse has not been able to help yet. I would like to develop a plan for continuing home treatments when a trip is needed. Backup plan is for wife to go to center but she does not want to do that.
Joe
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The best plan is for the patient to know how to puncture herself so you don't have a caregiver doing that. The important things a fill-in caregiver needs to know is how to give saline (slowly and stat); when to give saline; how to make sure the blood pump keeps running; the phone # for NxStage customer support; and how to help with take-off (though the patient can learn to do that self-serve as well).
My caregiver does nothing except makes herself available if there is an emergency. But, even though I can do it all myself, I still book an in-center when the wife is on a trip. The in-center visits are more tolerable now that I do my own needlework, and the staff is very good about listening to my input on machine settings.
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Agree with all those points on machine, NxStage support and saline. My wife could do all except stick. Her fistula is on her upper arm and is still maturing with veinous a little hard to stick right (sometimes). She is not able to do that yet. Guess she will need to go to center for those occasional times.
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Encourage her not to get lulled into complacency and think of sticking* as something she will always let others do. She may be able to learn self abuse once her fistula matures a bit more.
* - Clinic staff are often trained to stay PC and never use the words "stick" or "puncture", but I prefer the direct honest approach.
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I agree with you Hootie. a big reason for home hemo termination is caregiver burnout. I often thought a small local network of caregivers like us could fill in for other caregivers to spell them for a trip or whatever. NxStage is experimenting with in-center facilities where I hope a patient could go on occasion to spell their caregiver. Also agree with Simon Dog that the patient should learn as much as possible but to leave them with someone not as well trained is not possible in many cases. Imagine NxStage clinics across the country with the option to "drop in" upon occasion.
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Unless a friend or relative is trained and willing to fill in, then I don't think there is any other option than to go in-center. I know I wouldn't want my husband to have to go in-center if I had to be away but I also know that he'd be in good hands at the center he is assigned to as a backup, opposed to him getting dialysis at a hospital where they are complete strangers and we do not know their level of experience, skill or care. Hate to say it but I think any center may be better than dialysis in a hospital. (we've been there, done that...was awful).
Hootie, hope you and your wife can come up with a plan that you both can agree on...good luck! I would say that whatever "backup plan" is decided on, to keep in-mind it is only for temporary use. Maybe looking at it that way (in small increments of time) it will lessen any anxiety.
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Unless a friend or relative is trained and willing to fill in, then I don't think there is any other option than to go in-center. I know I wouldn't want my husband to have to go in-center if I had to be away but I also know that he'd be in good hands at the center he is assigned to as a backup, opposed to him getting dialysis at a hospital where they are complete strangers and we do not know their level of experience, skill or care. Hate to say it but I think any center may be better than dialysis in a hospital. (we've been there, done that...was awful).
I've never seen anyone other than a RN doing the dialysis at a hospital, whereas clinics are staffed by tech with an RN or three on duty. This is for in-patient hospital dialysis, not an outpatient clinic run by a hospital.
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NxStage is experimenting with in-center facilities where I hope a patient could go on occasion to spell their caregiver.
This would be very easy if the facility were your "home" clinic. The problem is using other clinics, since an MD with privs at the clinic has to write your medical orders.
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I'm hoping the trial clinics are a success. If so, there may be a home clinic coming to a theater near you :) Now if they could only get rid of the aluminum contamination.