Overwhelming! Blech!

[poohkari]

I'm a bit overwhelmed by the NxStage training. Wade's not. It's easier for him, because he was the one going to clinic and watching what they would do to set him up/take him off,a nd this is all foreign to me. I'm getting good at it though (just hate snapping those lines!)

Wade's running 30 liters with a dry weight of 110 kg. Since he is on a catheter until his fistula sets up, the highest blood rate he can safely run at is 500, but due to constant "24" alarms because of the cath, hes been running between 450-480. It's still going to take a large chunk of the day up, but because hes not working presently, its a bit easier.

I'm also unsettled about the amount of ...SHIT thats going to be in our tiny apartment. We have a big open living/dining room, and we didnt put a tbale/chairs in the dining area for storage .. and the machine and pure flow and everything will be in the living room ... so I feel like its just going to be like a hospital. Too much medical stuff. Does this make sense? Or am I just getting way too nervous?

The good news is that Wades doctor is going to be doing nocturnal nxstage and Wade is his ideal candidate - so fingers crossed, in October-ish, Wade could very well be the FIRST PERSON on nocturnal nxstage! Cool!

I just hope this gets easier ...

[Sluff]

Things will get better hon.. my prayers are with the poo couple. 

[okarol]

Things will get better hon.. my prayers are with the poo couple. 

I believe it's "pooh" Sluff hehehe

[jbeany]

I got a set of $45 storage shelving meant for garages at Home Depot.  It's 3 feet wide, 2 feet deep, and about 6 feet high, and rated to hold 1000 pounds.  It holds almost all the boxes they sent.  The stuff is HEAVY, so don't get cheap shelving! I've got one last stack currently in the living room, but I'm going to rearrange my other closet to tuck it away.  NxStage sends you enough bags for a week, even if you have a Pureflow, so you will end up with a lot of boxes that you won't really be using on a regular basis. (12 in my case, more for Wade, who is on a bigger L dose.)  You might want to get two shelving units for Wade's boxes.  If you don't want to look at them, consider getting some long curtains and tension rods to cover the fronts.

All my little supplies are in a rolling cart from Walmart - one of the Rubbermaid style ones with multiple drawers.  I've got all the stuff in it that I use on a daily basis, and then I just keep the extras on the shelving unit in the orginal boxes.  Other than that, I've got the recliner, the Pureflow/NxStage, and a big round trash can.  I also cleared one small shelf nearby for my centrifuge and all the text books, etc.  The entire set-up takes up less than half of the the tiny 8x10 room I have it in.  (The other half is crammed with my craft stuff, but it all works out.)

When you are home, you can start the priming ahead of time, and then just leave the machine in recirc for a while - it really cuts down on the air in the lines, and shortens the snap/tap time!

It will get easier - I promise!

[del]

Hopefully he will be doing nocturnal come the fall. Hubby has been doing nocturnal on a Fresinius machine since last Oct and it is great.  There is a lot of "stuff" but I like the idea of a shelf and curtain around it to store it. We have one of those drawer thing - storage towers from walmart too  for small stuff. We were lucky we had a big bathroom so hubby built cupboard in there to store all the supplies. No doors to it yet but there will be. Will hide everything when it is done. 

[JerseyGirl]

I didn't think you could do nocturnal on a NextStage - you need to run longer and need more dialysate, H2O, etc.  Nextstage is for SDD ( slow daily dialysis).  I think you need a Fresenius to do nocturnal.  Correct me if I am wrong!

[Ginger]

There are folks doing nocturnal on the NxStage. One that comes to mind is Pat (her husband is the one on dialysis). She posts on the 'homedialysis.org' forums.

[JerseyGirl]

Short runs?  I know the nextstage can't make dialysate for an 8 hour treatment, or 6 either.  Anyone know the max tx time a nextstage can run and have bicarb w/ BFR 300cc/min?

[Ginger]

From what I read on another forum, the nocturnal runs on NxStage are using the PureFlow(?) and running at lower speeds.

[jbeany]

I don't see why you couldn't run for 8 hours with it using more than 20 L - If you did 30, you'd just need to use the Pureflow batch every 2 days instead of every 3.  And it would certainly be easier to sleep with it set to a lower pump speed.  It would be a lot quieter, for one, and your arm wouldn't vibrate from the venous return!  When I start out with mine set at 200, the time remaining is about 7 hours at that pump speed with 20 L.

[goofynina]

Does anyone know what happend to the Poohs?  Kari and Wade?  It's been awhile since they've posted, just hope they are hanging in there with all the training and all 

[poohkari]

Hey Lady, we're here. Things have been hectic. I'm about to post a big news update. Thanks for thinking about us, ladybug!

xoxo

[goofynina]

  So glad to hear from you and looking forward to reading the update 

p.s.  How did you know i loooooooove Ladybugs