I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: silverhead on July 17, 2007, 06:45:51 PM
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Completed our 6th day of training on the NxStage/Pureflow system today, Have to interject here that Sharon and I are the first people to go through the training while the Center nurses are also learning along with us, while being overseen by a Nurse from NxStage, at the end of it the NxStage Nurse/Trainer and the head center nurse calculated a new regimen based on her KT/V that adds 19 minutes to the time (for a run time of 3 hours, 1 minute) and upped the Dyalisate to 22 liters per session, which means we will only get 2 days use of the Pureflow and will have to pump out 16 liters then start a new batch. Thats a slight bummer because it raises the possibility of problems making a new batch to 3 times a week instead of twice, but time will tell on this I guess, seems like such a waste of fluid, maybe they will figure out an aid to this situation in the future, but I am hopeful that Sharon will improve her readings in time and we can go back to 20 liter batch's.
One good thing that has happened is that I have had 5 sessions of successful sticks in her fistula, on day two they handed me the needles and said here you go....... I have never put a needle in myself or anyone else in my life, and that was more than a little nerve wracking at first, but I am feeling less anxious each day in doing it.
One reason we are so anxious to get this home is that we have to spend about 3 hours a day on the road to and from the training center, whereas in the past with 3X dialysis it was 15-20 minutes driving to the our regular center, and wouldn't you know that we have been setting heat records here, so all the way home we are roasting in the car averaging 15-20 mph all the way home (North of Seattle area), no A/C in the car, who needs it in a cool climate, right?
We are not discouraged at all, and if I feel it even slightly, all I have to do is step out into the regular dialysis area and see the looks on most peoples faces and I am ready to face any problem they throw my way, I DO NOT want her to face that anymore on a regular basis......
more later. Tom
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Keep up the good work with the training. I've been doing NxStage for almost two months now (including the two weeks of training), and I would not trade that little white machine for anything (well, maybe a working kidney). Keep us posted as it progresses.
Adam
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Tom
You all will do fine hang in there. This board is an excellent resource for your questions.... we are all in it with you and are anxious to see you succeed. Somebody has the solution, just ask. Tech support is good too.
Don
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hang in there
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22 liters? That is going to be a pain. Wonder if there's a way to use prebagged and SL at the same time? I'm going to my training nurse's first "solo" as well (I'm on day 3 today). We're learning together, and we're both trying to be patient with each other.
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I couldn't begin to tell you how nervous I would be learning to stick someone. Hang in there many prayers and thoughts your way. :grouphug;
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Well I did learn today that when we go for home use late next week that will now have the "X2" level of the Dyalisate package delivered to the house (at least for the PureFlow), to help Sharon out, until now NxStage only had "X1" available, We really pushed about this because Sharon already is lucky enough to have potassium and Phosphorus in the mid to low-mid normal levels, with "X1" and a daily treatment it may remove to much of those, so one more concern is answered.
I also learned today that we will not receive the heater that goes with the NxStage, for use with bags in case of a PureFlow problem, they do have one at the center that we can borrow for the day until NxStage loans one to us, they stated that this is a temporary problem, they are coming out with a new, more compact unit and it makes sense not to be purchasing expensive units and changing them out soon after, so I can live with that OK.
Another nice news event was that we are fortunate enough to work with a really good Kidney center, they will provide us with a centrifuge for the blood tests (actually, they are providing virtually every item we way need, even a stethoscope and scales) when we have drawn the blood for the lab work, we take care of the blood draw, spin it, then call the lab and they will have a courier service pick it up, sure sounds a lot better than the challenges that Epoman was facing with his lab tests. More later
Tom
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I just started home dialysis in June, and I got a heater. The a few weeks ago nxstage called and wanted the heater back! My clinic fought to let me keep it, saying since I live in the gulf, there is a great chance for a hurricane or flood and bags would be needed. My nurse said don't give it back!!!!
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They assured us that we could borrow the centers heater and NxStage would overnight us one if we got into a problem, so we will wait and see I guess, the NxStage trainer did state that as these are medical equipment and need FDA approval and such that they cost mega thousands for each one, seeing as how they are very soon to replace them all with an improved model I can see why they are running low on them right now. I'm willing do give them the benefit right now......
Tom
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Apparently, no one is getting heaters until fall, when the new version is ready. Well, I suppose I could manage if I had an emergency. Room temp dialysate, though - BRRRRRRRRR! You can bet I'm gonna have the heat cranked up in my NxStage room to about 85 degrees if I have to do bags before they send me a heater!
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I know the trainers and NxStage would probably frown on it, but I can envision a basin or bucket of warm water that you run a coil or 2 of the fluid through to warm it during the session in an "emergency", until the new heaters get here, will try to put whats left of my brain cells into the idea........
Tom
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We are using the bags (I like the bags) and we have a heater, don't let anyone tell you you don't need a heater even if the room is 85. We have forgotten to turn the heater on and my husband was sooooo cold his teeth were chattering, we had 2 blankets on him and wamers you stick in the microwave. If no heater find a way to warm up. I kinda like the warm water idea.
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We are using the bags (I like the bags) and we have a heater, don't let anyone tell you you don't need a heater even if the room is 85. We have forgotten to turn the heater on and my husband was sooooo cold his teeth were chattering, we had 2 blankets on him and wamers you stick in the microwave. If no heater find a way to warm up. I kinda like the warm water idea.
Rob is the same way!!! You definitely need the warmer. We forgot to turn it on once too and he was frozen and this was on a 90 degree day.
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Okay, to warm the dialysate up, how about putting a heating pad in a towel and running the tubes through the towel with the nice warm heat in it.
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Our body thermo are out of whack. I sleep better in the summer than in the winter because I shiver so easy once the temp. drops. Great suggestion Kitkatz.