Bummer and question about Rubin Center

[KatieV]

I finally got a concrete answer about nocturnal from my center.  My doctor and nurses thought it would be good for me, but the hospital administration will not approve it for liability reasons because they don't have monitoring capabilities.  I say BS to that as I do my treatments in the evening already and they leave at 5 pm.  I told them I'd sign a liability waiver (have already done so for a immunosuppression regime), but no go.

Besides all the possible health benefits, the biggest improvement would be for my quality of life as I'd get my evenings back.  I could make dinner, wash dishes, do long overdue organizing projects, or work on some hobbies I'm interested in.  My current daily schedule is the following:

7:15 am - leave for work
6:00 pm - arrive home
by 7:00 pm - start dialysis treatment (needles in, hooked up, pushing green kidney button)
so that by 11:00 pm - my husband can be in the barn doing night check
12:30 to 1:30 am - husband gets in from the barn
do the whole thing over the next day...

We are both exhausted (I routinely nap in my cubicle during lunch), our house is a mess, our sex life is nonexistent, and I just want my life to stop spinning!  I am finally listed on the donor list and working with a center to get into a paired exchange program.  Since I have a PRA of 100% though, it could be awhile before they find a match for me. 

That being said... has anyone dealt with the Rubin Center in New York?  They have an internet monitoring system and have a nocturnal NxStage program.  Their centers are between 2 and 3 hours away, so not too bad if I had to make an occasional trip to a facility.  Anyone know if they take long distance patients?  I'm thinking of calling them, but would like to know of others' experiences first.

[Roadrunner]

We go to the Rubin Center and live over two hours away and in a different state.  I know they have a lot of long distance patients, some in Vermont, Mass and up by Buffalo.  Since you already know how to use the NxStage they will train you for about 3 days.  You will need to get a motel for the 3 days and then you only need to drive in once a month.  The nurses are great.