I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: PrimeTimer on September 24, 2014, 06:42:20 PM
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Just curious...why would NxStage have to contact our nurse first before sending us a new sediment filter to our Pureflow machine but not when it comes to sending us a new Fluid Detection Sensor? Anyone?? Of course we will be getting with our nurse about it but wanted to know if anyone else has run into this. :waiting;
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They pulled that on us too. I dont know why.
We are using bags now . We are a few days into it. Not fun. I prefer the pureflow. I hope this works to reduce the aluminum. We are getting a shipment of 75 cases tomorrow. Thats a ton or more of weight to move upstairs in our house.
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Thats a ton or more of weight to move upstairs in our house.
Does your delivery driver do that moving or do you have to? The driver NxStage sends to me puts the stuff away - sometimes I help, but the last time he came, I was on the machine and I'm not going to have my wife do any of the lifting.
Assuming you are talking about the short ton (2000lbs), the fluid alone weighs .83 tons, and that's before you factor in that the solution probably is slightly more dense than water. Add the bags and packaging, and your estimate that 75 cases weighs a ton would appear to be spot on.
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Thats a ton or more of weight to move upstairs in our house.
Does your delivery driver do that moving or do you have to? The driver NxStage sends to me puts the stuff away - sometimes I help, but the last time he came, I was on the machine and I'm not going to have my wife do any of the lifting.
Assuming you are talking about the short ton (2000lbs), the fluid alone weighs .83 tons, and that's before you factor in that the solution probably is slightly more dense than water. Add the bags and packaging, and your estimate that 75 cases weighs a ton would appear to be spot on.
I am hoping to have help as I dont want to make 75 trips up to the second floor storage area. In the past I did it all myself as the amount of boxes was minimal. This is a different story. They better help.!
Any estimates from any of you out there who switched to bags how long before my wife might start feeling something from the switch ? Her last aluminum was 41 so we have a long way to go. Tomorrow is day 4 on the bags. We are authorized for a month to start. then we will check the aluminum .
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I am hoping to have help as I dont want to make 75 trips up to the second floor storage area. In the past I did it all myself as the amount of boxes was minimal.
Does NxStage use National Logistics in your area? Their standard is to put the boxes away wherever the patient wants them. The only time I had to haul my own boxes i was when I used up the 5 day supply of bags due to a Pureflow problem, and NxStage sent the replacements via UPS (even though National Logistics was arriving the next day with my regular monthly order)
Unlike Fresenius, however, the driver in my area is not issued a battery operated stair climbing hand truck.
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We spent 4 weeks earlier this year in-center (no nxstage) and our Al dropped from around 22 to 12 after about 2 weeks. However the next 2 weeks we never got it lower. The neph said we were removing the AL from the serum but it was leeching back in from the tissue. So it may take a while. BTW our delivery co. is under orders to stack the bag cases anywhere we want.
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They pulled that on us too. I dont know why.
We are using bags now . We are a few days into it. Not fun. I prefer the pureflow. I hope this works to reduce the aluminum. We are getting a shipment of 75 cases tomorrow. Thats a ton or more of weight to move upstairs in our house.
Could not get a straight answer from the nurse about why the center has to be the ones (and not us) to "approve" and submit an order to NxStage for a new Sediment Filter. I really want to have a spare ready. I don't like waiting for problems to happen, I like to be prepared.
The others on here are right; the courier NxStage contracts for our deliveries brings the supplies inside and puts them where we want and rotates the inventory. Unfortunately, UPS doesn't do that but fortunately, NxStage only uses UPS when an order consists of only a few boxes or less. Also, I think if you ask them, NxStage can arrange to split up your monthly order due to what they called "space constraints". That was a relief! We live in a small apartment and did not have room for our existing 302 SAK's and new 402's that were ordered by the Neph without our knowledge.
Meanwhile, may sound absurd and I don't know if you need to carry bags up or down the stairs every day but if it's down, maybe look into using a flat board like a ramp to drag a box of the bags down or a handcart or...even a child's plastic sled or toboggan or lightweight container with handles pulled by a rope. Or...and I know this will sound really crazy but hey, gotta do whatcha gotta do...wrap the bags up in a small child's or padded infant mattress like a jelly roll, tie it up with rope and give them the 'ol heave ho down the stairs when you're ready to start treatment.
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This morning I took a bath in bagged dialysate. I guess Nxstage decided I smelled. I opened the outer bag and the entire inner bag (5 liters) splashed out on me. A BIG leak in the bag. SUCH FUN.
Its bad enough my hands hurt from the set up of 6 bags daily , now I have to deal with leaks. Isnt dialysis FUN!!
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Unfortunately, UPS doesn't do that but fortunately, NxStage only uses UPS when an order consists of only a few boxes or less.
Not always. When I used up 15 cases of bags due to a pureflow problem, NxStage shipped a replacement 15 via UPS.
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This morning I took a bath in bagged dialysate. I guess Nxstage decided I smelled. I opened the outer bag and the entire inner bag (5 liters) splashed out on me. A BIG leak in the bag. SUCH FUN.
Its bad enough my hands hurt from the set up of 6 bags daily , now I have to deal with leaks. Isnt dialysis FUN!!
Yippy...sediment filter should be on the way now. Need to get out my screwdriver and the manual to the Pureflow but looks easy.
I have had Fibromyalgia for many years altho I would not be surprised if at some point I test positive for RA (mother had it). I've had to be very creative and learn how to do things much differently in order to avoid pain and fatigue. For instance, sometimes I mop/sweep floors while actually sitting down on a small stool. Lifting, bending, stooping, pushing and pulling are all challenges for me but no matter how strange or weird my ways are, I've learned how to make doing some things easier on myself. Even the most simplest of things, such as opening drawers or cupboards is painful on the hands and shoulders. Forget tying shoelaces...and my ideas for "interior decorating" all include ways of making things easier to reach, clean or to simply get around (and people think I am just being creative and cute, ha!) Anyways, wish there was some way to hang bags that avoids having to actually lift them. Some sort of method for "loading" them onto the pole and then hoisting the pole up where it needs to be but in a way that doesn't create pain on the fingers, hands and shoulders. We need to put that on our wish-list for NxStage or some company to invent. Try warming or heating your hands every day to help with the pain. My "medicine" is laughter and Ibuprofen.
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Now 7 days into the hanging bags. This is NOT fun. I much prefer the Pureflow. Its generating tons of waste material too. This better lower my wifes aluminum or I will be very unhappy. In another 10 days we will be checking to see if there is any change in aluminum.
The extra stress of the bags has made dialysis stressful for the first time in the 2 and a half years we have been doing it. It doesnt seem like switching to bags should matter that much but it just seems so much harder and throws off our routine that we did for the 2 and a half years.
I am actually not sure what i will do if we have to continue this long term. I dont really know what I hope for. If the aluminum drops with the bags, then we may have to stay on them long term. If it doesnt drop then we can switch back to Pureflow and look at chelation therapy instead.
What are the rest of you doing out there?? How many are using bags and what are you seeing with the aluminum??
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I'm still using 20L of pureflow then 10L (2 bags at the end). I've had a AL of 12, 19, and 17 in that order. Another one coming in 2 weeks. Yeah hanging 6 bags is a pain. For what it's worth our neph (also medical director) said there was a manufacturer change for the saks. Anyone else heard that??
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Rockwell was making the concentrate for the Saks when all the aluminum issues occurred. I havent heard if they switched to another company. They use PISA for the bags. Pisa is a good company .
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Re: Sediment Filter.
UPS is lame. Got an email from them saying our package was "inaccurately sorted" and will be delayed by one business day. Azzwagons.
Re: SAKS.
Unless it's staring me in the face, the box and wrapping on our SAK's state they were manufactured in Mexico but I don't see the name "Rockwell" or "PiSA" on them. Where else can I check on the packaging for the manufacturer? We are using SAK 402's.
Re: Aluminum
They never did a baseline on my husband when he started in-center last September. We've been using Pureflow SAK's since December. His first and only Aluminum test (just the other week) came back at 15 and his Neph is okay with that. We are going to have him tested again in two months.
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"Unless it's staring me in the face, the box and wrapping on our SAK's state they were manufactured in Mexico but I don't see the name "Rockwell" or "PiSA" on them. Where else can I check on the packaging for the manufacturer? We are using SAK 402's. "
NXstage has the concentrate made by Rockwell in the US and then ships it to Mexico where they package it themselves in their own facility. Pisa is actually a large Mexican pharmacuetical giant that manufactures the solution for the bags for Nxstage and again Nxstage then packages it in its own facility in Mexico.
So in both cases , the dialysate is pakaged in Mexico.