Well day three of training is completed for my preparation to road trip with the System One. Today I brought home 22 boxes of supplies and arranged for 10 days worth to be sent to my Mom’s house in Chicago. I’m on track to finish training tomorrow and then I’ll do a couple runs at home. The plan is to hit the road on Tuesday and head East. Anyone living along I- 80, I-90 or I-94, say the Madison area for instance, I’ll be coming through between August 23rd and September 3 as I make my way to and from Chicago, I will dialyze for food.
My plan is to journal the trip here, along with my NxStage experience. So far training has been fine, I feel pretty tired but I’ve been getting up at 6 every day this week and then I’ve had to work late each day trying to keep all the balls in the air. It is hard for me to say what is the result of what, better I wait until after the entire experience to pass my judgment. By then it will be three weeks on the System One.
Training has gone well. Jackie from NxStage is in from the East Coast. I don’t think she is use to the number/type of questions that I’ve asked. I now think I have a pretty thorough understanding of the machine and how it operates. I’m already planning to borrow the machine again in October so I can participate in the KDEC conference in Baltimore.
BTW while in center I heard the price for the hard side travel case is just less than $600.
How did you happen to be able to “borrow” a NxStage for travel. I would
like to see other clinics make this available to Home Patients who currently use other machines.
Yeah!!! THere are a lot of us, I’m sure, who would be happy to continue on other machines, in my case doing nocturnal, if we knew we could get an NxStage (or whatever else comes about in the way of portables) on loan, for holidays or other trips away.
Well Mel’s posts here on HDC was the first time I heard that NxStage was offering a travel only option.
The Northwest Kidney Centers use to offer the Ready system for home hemo patients to borrow up ‘til the early 90s so NKC asked NxStage for an agreement that would allow it again. I asked Jacqueline, the trainer that was here from NxStage if the travel only option was widely available she said she would let me know, NKC may be piloting the program. If I hear more details I’ll pass them on. Mel may have information on Mrs. Mel’s provider’s program too.
Bear I don’t see why a home hemo dialyzor from downunder couldn’t train to use the NxStage and then borrow it for a couple weeks, one might be charged $1,500 a week to do it but it seems plausible.
Today I finished training, I have a System One at the house along with two dozen boxes. That’s enough supplies for nine runs, I’m planning to dialyze at home Saturday and Monday on the System One and Sunday on the PHD. Then the plan is to head out on Tuesday, heading East.
I’ll be trying to leave Tuesday and just drive as far along as I feel like before stopping for the night. Work as always may have something to say about my schedule but if I can I’ll start Tuesday and take Tuesday off dialysis. Wednesday I may try for Yellowstone or the Tetons, I’ll figure out the route this weekend. The goal is to get to Madison, Wisconsin before the 28th.
Dori has anyone ever dialyzed in your home? I assume as the Director of Home Dialysis Central you’d allow such a thing.
The goal is to get to Madison, Wisconsin before the 28th. Dori has anyone ever dialyzed in your home? I assume as the Director of Home Dialysis Central you’d allow such a thing.
Nope, no-one has ever dialyzed here–you’ll be the first! And, yup, I’d not only allow it, I might just take pictures to help document your trip. It occurred to me that a plastic milk crate would probably be just the thing to lift up the System One so it’s the right height next to our comfy sofa (by the TV, too) & fortunately we have lots of those. And you’ll even catch me in town if you get here by the 28th!
You say what? A milk crate to sit Nxstage System One on? C’mon now it deserves better! How about that nice antique end-table you have in the corner? :roll:
Last night was my first run on the System One at home. No problems, the only alarm was a #24 - because I moved my arm too much. I have pictures of the pile of boxes I’m starting with and of the System One in my dialysis room next to my PHD.
I’m going to wait until the road trip is over to report my impressions of the System One clinically, it’s been such a busy and topsy turvey week anyway and with the early morning runs followed by work it’s hard to sort out what should be blamed for what. One thing is clear the Aksys is easier for self dialysis, not that the System One is hard but PHD is so easy to get on and off the System One is harder by comparison. Still I was able to learn the System One in a week and I feel confident that I can use it safely.
I think I will need to stop for the night each day about 5 PM, eat dinner, find a dog friendly hotel room and then start setting up dialysis. Ideally I’ll be off dialysis and in bed by 11 PM. I’ve made a reservation at the Elephant Head Lodge www.elephantheadlodge.com for Thursday and Friday night. My plan is to drive Tuesday to Spokane or farther and then make West Yellowstone Wednesday night. Then I will have Thursday to drive through Yellowstone. Friday will be a free day - hiking with the dog, or just hanging out - and then Saturday I’ll try for an early start.
I’d like to spend Saturday night in Sioux Falls or south Minnesota, leaving an easy drive to Madison and dialysis at Dori’s. My Mom’s house is just about 90 minutes from Madison so I can do that whenever. I think I’ll make other reservations from the road on the day of.
I am excited. The route I am taking is retracing the route I took with my Dad in September 1981 (almost exactly 25 years ago) when he drove west with me when I was starting college. 25 years later, life is a bit different. I’m guessing Yellowstone is about the same.
They have me using 20 Liters of dialysate, a 400 Qb (that’s as fast as I’d go even for a couple weeks) and FF of 35.
The supplies aren’t too bad, the tricky part to do as a self dialyzor is to connect the blood lines, and the syringes to the saline bag. I’m running on the PHD tonight, should be interesting to see what one PHD treatment feels like after a week of System One.
Hmmmmm Bear could be a plan here we could work on. Pity Kerry Packer is no longer with us, he might have been able to sponsor us on a trip to US to train, then we could run a little dialysis travel shop out here to cover costs for our holidays in Oz!
Why connect syringes to saline bag/spike?..Why not the traditional way? I use two syringes w/needles to draw saline for my cannulation and end treatment…that way you don’t have to leave syringes on the saline bag…
Or, as we saw it done in the demonstration we observed, one can hang the saline bag with syringes attached on a bungie chord allowing the syringes to be within easy reach.
I was feeling under dialyzed yesterday, after dialyzing on the PHD last night I felt better. I talked to my unit this morning to see about increasing to 25 liters. If I run again on the PHD tonight I should have enough to go to 25 liters, maybe every other day i.e. 20 liters one day and 25 liters the next. I’m not sure 20 liters is going to be enough, maybe I’ll need to change my FF too.
I was feeling under dialyzed yesterday, after dialyzing on the PHD last night I felt better. I talked to my unit this morning to see about increasing to 25 liters. If I run again on the PHD tonight I should have enough to go to 25 liters, maybe every other day i.e. 20 liters one day and 25 liters the next. I’m not sure 20 liters is going to be enough, maybe I’ll need to change my FF too.[/quote]
My goodness, you must be quite a BIG guy! I myself only weigh 140lb…25liters is alot of bags to handle, but if your just using the NxStage for trips then why bother?..Just use 4 bags…but I know its best to dialyze plentiful, perhaps nocturnal at night would do the trick…
Noon Tuesday, I’m shutting down my work computer and hitting the road, I want to be in West Yellowstone by 5 PM tomorrow. The van is pretty well packed with a week’s worth of supplies.
I made it about 100 miles into Montana to a hotel off I-90 in Missoula. My dog is welcome for a $10 fee but the internet is free, not bad.
No dialysis tonight but it should be a pretty easy day tomorrow to get to West Yellowstone by mid afternoon, and then to be settled in and on dialysis by 7 PM. Well that’s my goal, we’ll see.
I forget a scale and a leash so I’ll have to stop at WalMart or some thing, but otherwise I think I’m fully equiped.
Beautiful country in Northern Idaho, it was dark once I got ten miles or so into Montana but when I stopped at a rest area I could see the sky is big.
