I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: funnygarcia on May 13, 2010, 12:14:44 PM
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The control unit of the prue flow freaked out and has been giving odd alarms, tech agreed to send a new one.
Our center rule is that water cultures must be drawn and cleared with each change in control unit. Labs are sent to a central Da Vita lab in Florida. I can't even send labs until Monday, takes about a week to clear.
I counted up boxes and we would be short on bagged fluid to see us through from now until Friday or Saturday of next week. Over the past two months I've noticed that Nx Stage has not been replenishing the dwindling supply of reserve bagged fluid. Sending out just a few boxes a month.
I called support, asking what we should do and why so few are being sent. Now they only allow ONE week of reserve, news to me. DH's has been running for nearly two years, we always had a two week reserve.
I asked for a two week supply, support said they would have to call the center.
Nurse calls, he talks about the high cost of shipping and patients using bags inappropriately (forgot to make batch, lazy, use bags instead of wasting part of a SAK, etc).
If they limit the number of bagged fluid, it limits the temptation of using them.
We are now only allowed one week of reserve.
Thanks for the memo on that policy change. :banghead;
DaVita cutting costs yet again?
How much reserve do you have?
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hey Funny...we are fairly new to NxStage, just started April 12th. We were drawn to it because of it's "portability" allowing us to travel. After our training, I called in our first order only to find out the same thing...we are limited to one week of bags for "reserve" and "emergencies". Believe me, I threw a fit with our Fresenius Clinic. What is the point of using a portable system if we can't "port" it? I was told that if we are going to travel, we should let them know the month before and they will get approval to send additional supplies. Well...that won't work! No spontaneous travel? WHAT???? So, now our neph has gotten involved and we have been approved to order 2 weeks worth of bags + the 1 week of reserve. We'll see how it goes this next month or so.
I may have to become a patient advocate on this issue. I understand the cost savings of using SAKs but if the patient is the primary consideration in this modality, it should be their choice whether to stay home or to travel. Personally, I prefer using the PureFlow because it is faster when setting up and no heavy bags to lift. But if we are to be "homebound", why not just continue with in-center and do a short daily? It's my understanding that Medicare is charged a monthly care fee based on the prescription for dialysis. So the cost savings of using SAKs vs. bags appears to be profit margin motivated.
And that's my 2 cents! :rant;
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Well, if they are still using the same inventory system they were when I was on NxStage, you call in and give them a current total of your boxes, so they know how much to send, right? So here's the trick to getting exactly how much back stock you want.
LIE.
Worked for me! ;D
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Unfortunately they are trying to cut down on that sort of stuff, jbeany. Charging the canter for extra bags, etc. If you are going to ask for more bags you need to have a fault with the sak. (I trust you all know where the fluid sensor is in the pureflow chassis) I agree that the idea that 1 week backup is sufficient in case of a real emergency is naive.
Hi Nx Stage representatives monitoring this forum!
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I thought about lying on the auto inventory system, but then realized my center knows when I use bags or SAK anyway from flow sheets (and now the Genie).
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Just downgrade your order by a bag or two at a time. "It got punctured during shipping." "I dropped the box while cleaning and the bag split open." Don't order a full week's worth at once.
My center preferred that I have a good supply of back stock - they were the ones who had to scramble if I had a problem and didn't have enough supplies! In the middle of a snow storm here, that can get kind of scary.
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My mum's on PD....
Baxter and the hospital insist that we keep ten days in reserve, to allow for punctures, dropping bags, delivery truck breakdown, adverse weather conditions, etc...
It makes sense... If we were low on supllies, it would be a worry... Let's face it, this disease is stressful enough to be dealing with without penny-pinching pen-pushers making it worse!...
Darth...
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The control unit of the prue flow freaked out and has been giving odd alarms, tech agreed to send a new one.
Our center rule is that water cultures must be drawn and cleared with each change in control unit. Labs are sent to a central Da Vita lab in Florida. I can't even send labs until Monday, takes about a week to clear.
I counted up boxes and we would be short on bagged fluid to see us through from now until Friday or Saturday of next week. Over the past two months I've noticed that Nx Stage has not been replenishing the dwindling supply of reserve bagged fluid. Sending out just a few boxes a month.
I called support, asking what we should do and why so few are being sent. Now they only allow ONE week of reserve, news to me. DH's has been running for nearly two years, we always had a two week reserve.
I asked for a two week supply, support said they would have to call the center.
Nurse calls, he talks about the high cost of shipping and patients using bags inappropriately (forgot to make batch, lazy, use bags instead of wasting part of a SAK, etc).
If they limit the number of bagged fluid, it limits the temptation of using them.
We are now only allowed one week of reserve.
Thanks for the memo on that policy change. :banghead;
DaVita cutting costs yet again?
How much reserve do you have?
And they say Healthcare will not be rationed under the new bill... If you ask me, I would say its happening before its even put into act.
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JB, you ROCK - I heartily endorse your solution.
After my unit dumped me and I was on my own for dialysis, I had a clinic in my little apartment. I lied, then lied some more and NEVER told anyone what my real inventories were. (gee - do you think I have trust issues?)
Thanks to IHD, all my bases were covered. When I got my TX three months later, I told my new clinic that they would need a big truck to get the supplies (and even then I kept a closet full of supplies). Four people and a 19' U-Haul later, I could see my living room again...and bedroom... and closets.
Now I hoard my tx meds, keep a close eye on the expiration and rotate as necessary.
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We have the same problem now with getting hanging bags. When my husband started Nxstage a couple of years ago they were great with back-up supplies but not any longer, they're awful now. We live in Ct and this past winter tried to get extra bags as usual since if a delivery is due and it snows night before driveway and stairs have to be shoveled or they don't deliver, they said same thing, only the 1 week back-up and wouldn't send them.
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The saga continues.. I was sent extra boxes, but no warmer bags. :banghead;
Hopefully they are coming in the monthly order to be delivered tomorrow, otherwise center staff will have to make a delivery run. ;D
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Yes its seems like we have to beg to get those travel boxes....... I told them that I needed to be gone on my job and then need to send the matereals..... thy did.....and now I am working on two months of travel........ I think rationing is possible I think it depends on your clinic.....
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While I fully understand the cost/profit margin issues, I truly believe NxStage would be better off putting 4 weeks of hang bags and 4 weeks of SAKs in the first delivery and then allowing the patient to place their order based on replacing what they have used. For the amount charged (ours is about 38k per month) it should be the patient's choice whether to use bags or SAKs on a daily basis. Marketing a system as being "portable" but then refusing to allow the patient to be spontaneous in their life by tying them to the SAKs seems like false advertising.
The amount of time the NxStage reps and the clinic personnel spend on this issue is a waste of money. I'm happy to report that our clinic has supported us in this issue and we now have the ability to travel as we need/want to with plenty of supplies here at home to do it with.
I happen to like using the PureFlow as it is easier, no heavy bags to lift, less trash, less steps in set up and tear down. But, I also like to be able to take the cycler and supplies and head out for a few days when WE feel like it, not when we happen to have enough supplies to be able to do it without exhausting our reserve supplies.
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Dispensing Post Reply...
They told us we could only have two weeks worth of bags a year, which sounds reasonable if you are only using them to travel, however...
We often run into issues with our Pureflow and need to use bags. Most of them have to do with our work schedules and the ruthless task master that is the Pureflow computer. Well... maybe it's not ruthless, but the math behind draining and making batches is not helpful for a regular daily dialysis schedule for working people without careful planning. 3 hours to drain + 7 hours to make eats up a whole day before you even start dialysis. We drain ours at night on the day before it goes bad so we can start a batch before we go to work. This works okay as long as we remember to follow this schedule and don't have any alarms or PAK expirations. I don't know what a working person is supposed to do when their PAK expires, call in sick? The other time issue is the 72 hour dialysis batch life. If you start a batch at night or on your skip day, go to sleep, go to work, come home and eat dinner, your batch may be 20+ hours old before you use it. The next day it is 44 and the next day it is 68 hours, which gives you a four hour window for dialysis. This is okay most of the time, but if your schedule changes in any way you may be out a day of dialysis unless you have bags.
We like having the Pureflow, our garage isn't filled with empty boxes anymore, but I wish they would make it more user friendly and faster. Listening to a batch expired alarm or the finished draining alarm at 2-3AM isn't any fun. I roll over in bed and go DRAIN? DRAIN? like a zombie. I don't think Jenn appreciates this, but humor is the how I get through this stuff. Pressing go to test for chloramines and watching "Dispensing..." display for 2 minutes before the fluid comes out is an annoying waste of time. The Pureflow needs to know what time it is and know when to shut up and when to scream. It needs to know what your schedule for dialysis is and work with you to help you meet it. Some alarms aren't that important. If NxStage wants to reduce bag use, they need to work on the Pureflow.
Post expired, Press Stop then Go then Stop then Up, Up, Left, Right....
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:rofl; I agree! If they could find a way to make a batch in an hour and drain a little faster.....or better yet, make the pureflow portable also....
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I don't know how they could make it portable, besides maybe intergrating it into the dialysis cycler as a subroutine with a special cartridge to make small hanging bag batches. A metal carrying case could double as a tank to hold dialysate. A UV light and conductivity tester could be integrated into the portable warmer? The Pureflow uses a lot of activated charcoal and some metal shavings or something in the water filter PAK. I don't know how you could shrink the PAK. About 20 years ago someone experimented with a 6L dialysate per treatment machine. It had a little filter that cleaned the dialysate for reuse during treatment. I'm sure they patented everything, probably won't see anything like that on a NxStage machine.
Maybe they could make a pureflow sak that is portable like the hanging bags? You would have to keep up with the 72 hours though which would be a big liability for them.
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What's old is new.
8)
Kidney in a Suitcase
Monday, Jan. 05, 1976
http://www.time.com/time/magazine/article/0,9171,947623,00.html
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Man, that 24 lb suitcase and only 15 lbs of supplies for several days....wow! We love the NxStage since it allows hubby to dialyze daily and he feels SO much better than he has since this all started in 2007. But, if we could get a machine that weighs only 24 lbs....that would be so much easier on my back when I'm horsing the NxStage into the back seat and loading 15 boxes of hangbags plus at least 2 other boxes of ancillary supplies to be gone for a week. Thanks for the article, Zach. I had heard about the WAK but not the suitcase.
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There were once Giants in the Earth.
Dialysis in Wonderland
Published: April 17, 1988
http://www.nytimes.com/1988/04/17/travel/l-dialysis-758588.html
Anchorage Daily News - Aug 20, 1983
http://news.google.com/newspapers?nid=1828&dat=19830820&id=48whAAAAIBAJ&sjid=m54FAAAAIBAJ&pg=4064,2589982