I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Vt Big Rig on June 19, 2015, 05:57:06 AM
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Hi All
I have read other comments mentioning it but I am on a personal crusade to force Fresenius to offer some respite care.
Bad enough I have to deal with this but my blessed wife now has to also. If she needs to go away for an emergency, or God forbid, she gets sick the only option they offer is to go in-center. Strange person sticking you and a different machine.
I believe they should offer either a nurse coming to your place or have a Next Stage machine at a center where I could bring my own supplies. I know this could only be in case of special circumstances.
I bring this up at every clinic and to anyone from Fresenius I talk to . They want you to believe you can fight dialysis into your life. This would go a long way to that.
I am a private insurance patient so I get a call every month checking on me. I bring it up to them every time also.
If enough of us do this we can make Fresenius implement something like this. I hope I can convince others on Next Stage to join my "crusade".
Talk to your clinic, or your neph, or your nurse, or anyone involved. If enough of us take this up , it will happen.
Thanks and God Bless
Vt Big Rg
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I was with DaVita when I was on home hemo with NxStage. We had a separate home training center that had two or three machines set up in individual rooms. You were allowed to go into the center for respite care for I believe up to two weeks per year. They wanted you to schedule it ahead of time to make sure they would have a machine for you and a nurse on duty (unless it was an emergency and they would work you in).
How did you get trained? Would your training center be able to fit you in for respite care? I agree that this is a *necessity* for those doing home hemo to prevent absolute burnout for caregivers and to keep continuity of care. Even if you had to go in center, could you request to cannulate yourself (or does your wife cannulate you?) When I had to go into the hospital a couple of times when I was on home hemo, I insisted on cannulating myself regardless of how sick I was. There was no way a stranger was going to be cannulating me unless I lost the use of my free arm.
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I use an FMC center, and do home hemo (tried BabyK for a few months; am now on NxStage). I have never had any problem booking some in-center appointments when my wife travels and is unavailable to cover for emergencies (I do the treatments without help). I also don't hesitate to ask for an in-center appointment or two if I have the slightest problem with treatment and want to make sure I am "on track". They didn't give me a specific limit on the number of days I can do this, and they even held me hostage in the clinic for a month (due to valid medical reasons - I was recovering from surgery).
The clinic has a NxStage they use for training. If the home training RN is working at the clinic that day, and the machine is not being used for training, I get to use that machine. If not, it's into one of the main clinic chairs.
I always self-canulate - at home; in center or hospital. I take blunts with me when traveling (and not the kind of blunt used to relieve nausea 8) ), and I once visited a small clinic that did not stock them and had never seen a buttonhole fistula.
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How did you get trained? Would your training center be able to fit you in for respite care? I agree that this is a *necessity* for those doing home hemo to prevent absolute burnout for caregivers and to keep continuity of care. Even if you had to go in center, could you request to cannulate yourself (or does your wife cannulate you?) When I had to go into the hospital a couple of times when I was on home hemo, I insisted on cannulating myself regardless of how sick I was. There was no way a stranger was going to be cannulating me unless I lost the use of my free arm.
I was trained at the clinic with the machine that was eventually shipped to my house. And I hate to admit I have not had the courage to self cannulate yet. We decise as a team to always use sharps base on infection possibilities. Not the reason ...just a chicken :'(
I have heard that DaVita has some of these set up.
As far as my FMC clinic, they do not have a Next Stage machine there except when they are training someone. Hence why I keep bringing it up to them.
Simon Dog .....
How have you felt after being on an in center machine? It seems to me going from a daily treatment to one usually used there times a week would be different.
Vt Big Rig
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Simon Dog .....
How have you felt after being on an in center machine? It seems to me going from a daily treatment to one usually used there times a week would be different.
Vt Big Rig
I never really noticed much difference. As I told my doc "I generally feel pretty good when I an not napping".
There are +'s and -'s with buttonhole and sharps. My doc (and some papers) suggest that buttonholes are less prone to pseudo aneurysms than sharps, and I have not yet had an infection in 2 years. I also prefer them since there is less chance of infiltration if I move, which can happen with nocturnal. Despite what some may tell you, there is no singular answer as to which is better.