My husband and I were the first patients at our clinic to be trained to use the PureFlow system instead of bags. They chose us because we learn quickly and are fairly flexible. The nurses at our clinic had to learn along with us so they will be able to train any new candidates. So our training has not been typical.
It has been one long comedy of errors. And we essentially gave up most of a week of vacation in order to go through this process.
Last week the NxStage rep worked with the nurses at the clinic, getting them used to the system. They called us to see if we could come in Monday afternoon to meet with the rep, so we quickly rearranged our schedule Monday to accommodate that additional time. We took our cycler in then, too, so it would be ready for us the next morning.
But upon arriving Tuesday, they told us that we would just be using our normal bags because the lab check for the water was not back yet, so they had not made a batch of dialysate, yet. So, Carl is doing a regular treatment while the rep is showing me things about the new system. He can't see them very well, because, of course, he is stuck in the chair.
The NxStage rep asks if we can stay after our treatment on Wednesday so she can reveiw some things with us and the nurses. No problem.
Except, when we arrive on Wednesday, we discover that the lab test on the center's water got lost, so we will not be dialyzing with PureFlow that day either! To top it off, the center does not have any dialysate to match Carl's prescription. They say it will be okay to use a different prescription for one treatment.... Huh?
So we go through another regular treatment and finish about 12:15, ready as requested to stay later so the NxStage rep can work with us in tandem with the nurses. Only the nurses have disappeared for their lunch break. After waiting a while (seemed like forever by then), the rep decided to simply go over things with us. And says that she can do the same thing with the nurses when they come to our house on Thursday.... No problem.
The tech at the clinic tells us that UPS will be delivering the chassis and supplies Thursday at our regular delivery time and wants to know when that is. We are never home for UPS deliveries, so we have no idea. She calls UPS to see if they can arrange to have our supplies delivered in the morning so we can do our training in the afternoon, and gets the very clear and definite message that the supplies will be delivered no later than 7:00 PM!
The NxStage rep assures us that she doesn't need to leave until Friday morning so it is okay if the unit doesn't arrive until late. It might be all right with her but, hey, I want a life!
So, this morning I hang around the house (okay, I was cleaning like a mad woman), waiting for the delivery while Carl was doing maintenance work at school. He comes home for lunch and we get a call from the clinic asking if the supplies had arrived. Nope. Honestly, did they think I wouldn't call them? So UPS pulls up around 1:15. We open the big box with the really cool cabinet that eveything is going to fit into and
UPS has managed to drop the whole unit on one of the top corners and broken it. The top is made of Corian! And it is broken!
Calls back and forth to the clinic ensue. They are on lunch break when we called the first time, so we left a message.
they must take a lunch break every day. Who would have thought?? Finally they say that they will be out around 2:30 PM.
When they arrive they say that they will have to get a batch started and draw a sample to get it back to the clinic no later than 4:00 PM. Okay. Chit chat. The NxStage rep is getting the nurses involved so they would be prepared to teach the next round of folks learning this system. She said that she had to check them off on their skills. I got a bit tickled over their having to be assessed for proficiency.
I notice that time is passing and it is getting close to the time that someone will have to leave in order to make it back to the clinic in time. I mention that perhaps the sample should be drawn. Who's running this training? So this process actually takes pretty long because they have to prep the port with Betadine and let it sit for 3 minutes. The clock is ticking....
Training isn't finished, but one of the nurses has to leave to take the sample back to the clinic to get it on the FedEx truck to go to the lab. The one who really should stay to finish the training is the one who drove her car, so she is the one who bails out.
We start draining the SAK since it can't be used and finish off the training. We will have to run a new batch and take another sample from the end of the 72 hours that the batch is viable. We will have to take that sample in to the clinic early next week.
A new chassis will be delivered on Monday (I sure hope they don't drop it!). So we will need to empty the contents from this one and reconnect them to the new one. That will be good practice.
I'll have to draw a dialysis sample from the mix before our monthly visits to the clinic and keep it on ice until we get there. So I'll have to add that to doing the Kt/v each month. A month of supplies and two PAKs werre delivered today along with the chassis for the system. I can hardly believe how LITTLE there is. Whew, a whole new area for collecting junk will be available in my garage!
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