Need to vent, not at all happy with NxStage

[Speedy1wrc]

So Home Hemo is supposed to make things better right? If my experience is par for the course, I think not.

I'll start by saying my nurse is absolutely phenominal. If DaVita had more nurses like her I'm sure they'd have more Home Hemo patients.

Beyond that things haven't started too well.

A couple weeks ago I got call from someone at Davita to confirm my PureFlow SL delivery and was told it would be a new machine and would come in 3 boxes. Great! However, when the delivery service showed up it wasn't in any boxes and it certainly wasn't new. It wasn't even wrapped and had been sitting in the back of a dirty van all day. The delivery person just grabbed it around the middle where the fittings are and hauled it in. Not terribly sanitary for a machine which is supposed to produce ultra pure water. When I went to set it up I found a big broken piece of the top tossed in the tub which didn't sit well with me. I suspected it had been dropped. The tub also wouldn't pull out without using everything I had to yank it out. I then tried to make a SAK and the controls didn't behave as usual. I couldn't get to the heater settings and finally it wouldn't drain properly. I told my nurse and she said she would contact NxStage for a replacement. Instead they gave her a hard time and didn't want to do it. Really? In the end they sent me just a new controller which made it better but I still am not terribly happy about it. Did they think I wouldn't notice the broken parts and that it didn't work?

With a dead Pureflow SL I needed to get more bags to replenish my reserve that I was using up. So the nurse called NxStage again and they ended up charging the center to ship them out. The reason we needed the bags was due to a dead machine yet they wanted to charge us? Not cool. In any event they told her they would be coming in this week which was ok since I didn't need them till next Sunday. Well, they showed up unannounced last Friday via UPS and they were dropped in the snow outside the house while we were at the center. No notification from NxStage that they were coming, the boxes weren't labeled as being medical supplies, nothing. Well, all the boxes were soaking wet and fell apart so I ended up with a pile of bags sitting on my garage floor. This time I called NxStage myself to complain. I spoke to a person who said that she would have someone contact me that day and someone would pick up the shipment Monday morning. It sounded nice if nothing else. Unfortunately no call ever came. Then on Monday the nurse had a voicemail saying that they were going to charge the center $250 to come and get them. Again, why? According to NxStage the bags were fine.  Sure, why not, just grab a bag up off the dirty garage floor, good enough. Makes me wonder what the mentality is at the factory. And still I have yet to get any sort of call back from NxStage.

In the voicemail she was told that the new shipment would come in 2 parts, one tomorrow and one part on Thursday. As to be expected UPS shows up today just as my partner was going to put the needles in. Sheesh! The UPS driver was nice though and put them in the garage, which was awesome. While on the machine my partner brought one box in and put it on the floor. After treatment was done and we were cleaning up she found the floor was all wet, really wet. As in a whole bag leaked and soaked everything. By now I was pretty upset and went to the garage to check the other boxes. Out of 8 boxes, half were leaking. Some outright leaking right through the box, the others saved by the outer bag but still useless. So now I have to rent a cleaner to get all the dialysate out my carpet and flooring, and I have no bags for dialysis...grrr!

I am really disturbed with the quality issues here. Bad customer service, bad shipping logistics, bad bag manufacturing. The thing I start to worry about is are there quality issues in other areas? Is the dialysate made correctly, what about cartridges? In addition, the last 3 days on this cycler (of which I have 2 because of a shipping screw up) I am coming no where near my UF goals and the machine is behaving oddly(the venous pressure is way off amongst other things). Do I wonder if there is something wrong with it too? I hesitate to have the nurse call since they've blown her off already and obviously they haven't done well communicating with me either. This is sad and shouldn't be happening

Please tell me this is a one in a million anomaly or I am going to be really scared. I have zero confidence in NxStage and unless something changes for the better, I am seriously thinking about going back in center as bad as that is.

[Bill Peckham]

Wow, that truly sucks.

The delivery issues, or ones like them, have been reported by others but the initial delivery of a PureFlow, seemingly from patient to patient? I'd want an explanation of what happened there, that's unacceptable.

Going forward I think you need to have confidence in your cycler, I can understand why you'd be nervous. Have you looked through the settings? Do they look right?

As far as the machinations between NxStage and DaVita RE who owes who how much, I'd leave that to them.

[The Noob]

we've had similar issues. UPS out here is awful. we told Nxstage we will not accept anything from them. haven't in awhile, until last week, they sent a box of warmer lines, guy set it down in snow out in yard and left.

i wonder if these calls are outsourced? they call every week for inventory, even if we just got a delivery.

sign of the times. bags leaking, boxes ripped, so on. call the main number and ask for a supervisor. don't relent until they fix it. get names of who you spoke to.

once recently, baxter was sending a bottle of except (spelling), just one bottle. a semi came down our 3 acre long drive in heavy snow. a semi, mind you. to drop off the one small bottle, which was packaged in a large box. they got stuck and had a time getting out, tore the yard up backing up all over and nearly took out the horse fence. in that instance, it would have been acceptable to leave it at mailbox on road, could have walked or drove car out to get it.

[cdwbrooklyn]

Speed1wrc, it sounds like the third party who delivers the supplies is screwing up.  Also, I would call UPS and speak to a supervisor regarding the driver’s actions.  Usually, when something like that happens to me, I call NxStage and they immediately place it.  However, I’m not sure if they are charging the center.  It’s hard to know what happened between the deliveries but I will definitely let NxStage know it’s unacceptable.

Hope things get better.  Please don’t give up. 

[Speedy1wrc]

So....chapter 2.

Since we had a "spare" cycler, I decided to swap it out this morning before treatment. When going in to check settings many were not at default. Many were settings which are never changed so we found this very odd. Despite that we got it up and running and within a few minutes of starting treatment the Express Warmer quit. It beeped then the temp indicator dropped and it wouldn't warm back up. I had an electric blanket on high under me and 2 other blankets on top and I still froze the whole time. We also had a heating pad on top of the bag the whole time but feeling the venous line it was still cool to the touch. Boo! So far I've had a bad PureFlow SL, a bad cycler, and now the warmer. It's not even baseball season yet and we're batting 1000! Every unit I got was defective.

On a positive note, the new cycler behaved well and I came off 0.2 under goal which is more usual for me. Getting the extra fluid off was a good thing. it also indicated more correctly the amount of dialysate processed and it didn't stop suddenly short of the indicated treatment time. So we are going to use this cycler again tomorrow and see if we have a repeat success. So far, so good.

This afternoon I called NxStage and fortunately got the same person I talked to on Friday. She was nice and apologized for the screw ups but it sort of rang hollow since the newest screw ups. I told her about the nurse being told she would get charged to pick up the damaged bags and she said that shouldn't have happened. She reiterated that someone should have been there Monday to pick them up at no charge. I now have the name of the person who spoke to the nurse and name of the logistics manager who has yet to call me after three promises. Time to start escalating this higher.

We chatted about yesterday's disaster and we came up with another baffling issue. I received 8 boxes of dialysate yeterday and she shows they shipped 10. No clue as to what happened there. Once again I was promised that she would look into it and somone would call me back, and yet again....nothing.

I mentioned about having to clean up several gallons of dialysate out of my carpet and floor and she did say they did have a mechanism for taking care of that, but that's still in limbo.

So as scheduled, as was told to the nurse, not me, UPS showed up with another 5 boxes today. Before he even took them off the truck I could see 3 of the boxes were soaking wet and crumbling. He pointed to the floor which I saw had a couple of gallons of water on it and suggested that the boxes got wet from the water on the floor. I surmised the floor was wet from all the dalysate leaking all over it. I didn't offer this to him however. I picked up the boxes and immediately felt how light they were and upon opening them found sure enough they had leaked. Will it ever end? I've lost count of how many bags I've had to throw out, it's rediculous. While I was at it I asked the driver how many boxes he remembered bringing yesterday and he recalled 8. He also showed me how his scanner wouldn't let him forget anything how it tallyed all the packages on the truck  and how it decremeted his route total as he dropped packages off.  He's usually pretty good as I get other pacakges often so I suspect it isn't his fault. Leaving the boxes in the snow must have been another driver as that came at a totally different time of day also. I'm rural and UPS comes between 5:30-6:00PM every day. That shipment came before noon, so something was different. When that mystery phone call eventually comes we'll see what gives.

As you might have guessed I called NxStage again and the person I had been dealing with was already gone for the day. The gentleman I spoke to looked up my file and didn't have anything to add. He asked how many new boxes I wanted shipped out and honestly I couldn't even tell him. I told him to just hand it back to the other person who he promised would call me first thing in the morning. I am not holding my breath.

I did forget to mention one thing from the episode with exchanging the controller. I got 3 boxes that day. One with the controler, a second with a replacement PAK, and then a third. The third was a bubble pac letter mailer. One you might to expect to get literature in. Imagine my surprise when I opened it. Mind you now I checked and the cost for that type of package and service was $44.53, not cheap. I'll give you three guesses as to what was in the package. I know you won't come close in a million years so I'll tell you. It was a 3x5 card telling me that a call tag would be issued within the next few days and that I should package up the old unit and have it ready for pickup. No stinking kidding! I mentioned this to the person I spoke to who was creating an exchange for the defective warmer and I distinctly got the impression he didn't really care. I sure hope and pray this isn't the attitude throughout the company although I am having trouble thinking it isn't.

Oh, as for the originally PureFlow SL, the driver said he brought it from a center. He said they just told him to come and pick it up and deliver it. It seems like no one knows why or how this occured. It's a work in process. No details on if it was refurbished or what not. I made sure to completely disinfect it and we have tested it a number of times. We are still waiting on the water samples before we actually use it.

I am actually very concerned about who pays for what. I go to a small center that is extremely nice. Many of the satff left the center where I used to be which was a mess and have made the new center an exceptional unit. I don't want the nurse who is also phenominal to take the heat for a NxStage or UPS debacle. Also with an eye to budgets, the center is pretty liberal on giving me marginally necessary supplies such as Pain Ease, so I don't want to tip the apple cart. I feel bad for the nurse because she is getting caught in the middle. She has been heroic trying to fix goof ups before I have to deal with them, so I want to take some of the burden off her in dealing with these seemingly simple issues.

The regional salesman was just in the area but next time he is scheduled to be in town I will find out and give him an ear full. Meanwhile I have a garage full of rotting boxes with leaking bags making an absolute mess.

Tell me again how Home hemo is supposed to be better than in center, I dare you!

[chook]

Good golly, I'd be at breaking too. Hope you get this all sorted as it must be so frustrating.

[KatieV]

Wow!  You've had a rough time of it.  My equipment was delivered to the center and I trained on it.  We then took it home in our car (thankfully we had two vehicles as the Pureflow is a tight squeeze).  My understanding is that they refurbish the equipment (including software upgrades) and send it to someone else.  I am suprised that you got equipment directly from another center. 

I've had great experiences with NxStage deliveries.  My normal shipments get delivered by National Logistics, a courier company.  They have always come within the window scheduled and the shipments are in good shape.  I've had several issues with the Pureflow control unit and had to replace it 4 times.  UPS delivered the control unit and several boxes of bags.  One of the deliveries UPS made last winter had leaking bags.  I believe they froze (I live in Vermont - it was very cold).  I called NxStage and they were great about replacing them.

I would definitely go "up the ladder" with your issues.  If I were you, I'd demand a new Pureflow Chassis too.  I wouldn't want to use one that was broken.  Good luck getting this sorted out!   

[Speedy1wrc]

I am happier but also somewhat upset today. I guess I finally made enough noise that I now have a very large ball rolling. I got a couple of phone calls from NxStage and did get this escalated up the ladder. What I am not happy about is what it took to get things moving. An observation would be that there are huge communication gaps in many areas at their facility. it seems like each person I spoke to had no idea what anyone else was doing.

The first call I got this afternoon was from who I thought was the logistics manager. As it turned ut he was just someone in that department. What was frustrating was that he obviously had no clue as to what had happened or what was supposed to be happening. This was in fact the person who was supposed to call me every day since last Friday and also take care of the shipment issues. To his credit he did arrange to get me 10 more cases of bags to be delivered tomorrow. He also arranged to have the damaged "boxes" picked up. I simply couldn't get through to him however that there weren't many boxes. There are full bags, empty bags and soggy piles of crumpled cardboard. I told him that I have close to 20-30 cases, or at least the remains of that many in a pile and whoever comes to get them would need a dumpster. He just didn't get it. It'll be interesting to see how the delivery person reacts when he sees what he is picking up. However he made a statement during our coversation which really upset me. He said "we'll do a one time deal" or in similar words implying that they were absolving themselves of any of the responsibility for any of this. In as many words they were doing me a favor. I can take that two ways, one to be insulted or the other that he is completely clueless. I'm not exaclty sure how to perceive that at this point.

It also seemed that the more people both I and the nurse talked to today the more different stories we got. Definitely a lot of confusion and mis-communication. In speaking about that particular topic to a couple of different people there, it was mentioned by them that they as a matter of course don't have these sorts of issues. As you might imagine that opened up a can of worms. I recounted just a few of my issues, some mentioned here and soome  from personal conversations with others to contradict that. Then began the escalation process.

I was told that whenever there was a problem I should call them to let them know, feedback is important. A note here to everyone to make sure you let them know when there are issues. And I would also encourage you to do the same when there are good things that happen. tell them when they do a good job. But then I brought up to them that I have been calling for a week with no calls back and I've been left in limbo. That was a key in escalating this, and so it did.

At that point I was put in touch with the Customer Service Supervisor. She was extremely nice and listened to my concerns for quite a long time. We didn't uncover any smoking guns, but she promised to follow up on several of the issues and I believe she will. She will be investigating why no one called me back. In addition she confirmed that their policy was to pick up damaged goods at no cost. So that wil be another good read when the book comes out. She is having the logistics manager contact me so I can get answers for all the biggest shipment issues which have occured.

I am anxiously awaiting that call with all the multitude of stories that have been told. In speaking with the other person from logistics today he made a comment which I didn't catch right away which belies possibly why he was implying it wasn't their fault. it wasn't till I spoke with the nurse afterwards that she also brought up what he was referring to. He had mentioned in passing dealing with an issue of the bags freezing and that was why they were leaking. On the surface that seems reasonable but being that they were ordered on Wednesday and arrived on Friday that doesn't fit. They were somewhat cold when they arrrivd but certainly not frozen. Those bags are the weight of a decent sized turkey (sorry) and if they were frozen at the warehouse they couldn't possibly have thawed by the time they arrived a day and a half later. And insinuating they froze in transit isn't going to fly (turkey). They still have a quality issue and I hope someone will take it to heart and actually investigate with a modicum of vigor.

In any event, more good news. The replacement warmer came today and I am no longer freezing. A huge improvement. Hooray! The replacement cycler worked again today which allowed me to hit my UF goal, so life is good. I am confident that some significant progress has been made but as they say the proof is in the pudding. We have action points and will see how they get resolved.

Chapter 4 tomorrow, stay tuned!

[smcd23]

What a saga! And I thought FMC was bad delivering a months worth of PD supplies to us and leaving them outdoors on our back porch. Still an entire flight of stairs (in a very narrow hallway to boot) away from where they needed to be because we were not home, and the file said "leave by door" It wasn't the normal driver so he didn't know that meant leave by FRONT door. In any event, I can say that having the supplies delivered by their own private company seems to go better than having things shipped via UPS.

Did you ever end up calling UPS to complain? I suspect half of the issues with the leaking and damaged boxes are the doing of UPS and the shipping process, and not necessarily NxStage. I'd make sure they were very aware of what their employees were doing to life saving medical supplies.

I'll be interested to see what the next set of phone calls brings. I know when my husband was doing PD, calling their customer service dept was often like slamming your head off a wall - lots of pain, little satisfaction.

[Speedy1wrc]

You just reminded me of a task I forgot to do. I (as a curious engineer) want to grab one of the leaking bags and see if I can figure out why it leaked.  I am going to examine it to see if a seam gave out or there are any abrasions anywhere. Any whodunit's to see about solving this mystery.

If one bag leaked or even a small number did I might not give it as much thought, however I have a mind boggling number of empty bags sitting on my garage floor. If there is something in common or a flaw I'd really like to figure it out if not just for my own edification.

I wasn't told where the defective material is going, so I can't say if it's going back to NxStage or just being disposed of. Before this episode fades away I want to do what I can and be as informed as possible.

[Speedy1wrc]

Possibly the final chapter, or maybe not?

In Thursday's conversation with the supervisor of Customer Service, I was promised a response if not that day, within 24 hours, guaranteed. Friday came and went and not a word. I knew better than to hold my breath. I guess I must have had a premonition, or maybe I am just jaded. I did get a call from someone who didn't identify his position, but I am guessing a Customer Service representative? I am wondering why after being told that I had one person to deal with, yet another new person started in. The supervisor swore up and down that I could count or her, so? For the record the person who did call did not address the issues at hand. He called about a related but separate question.

On Friday morning prepping for treatment I opened another of the boxes which were replacements that came earlier in the week. Yet another leaking bag. I'm glad it didn't leak through the outer wrap, but still another jab.

I did get my hopefully final replacement delivery too. NxStage subcontracts to National Logistics who then subcontracts to a another carrier who then puts it out to a local delivery company. Both times now the local delivery person was very nice which I really enjoyed. Pluses like that are encouraging. I was compelled however to open my mouth and ask this last driver if he had been instructed on what he was dropping off, and also what he was supposed to pick up. Unsurprisingly he didn't have a clue. I think he was so far removed from the source that it was inevitible. In both deliveries neither driver was aware that they were to deliver either one floor up or down. The first driver was in no shape to be hauling cases of bags down to the basement but smiled and did it anyway. I helped out, but am not in any sort of condition to do it either. For the second shipment I just had the driver bring them in the door. I wanted to check each case before having  yet another flood. As of this morning there are no puddles so a generous eound of hand clapping is in order.

As of tonight I can finally use my PureFlow SL so I should be done with daily bags. I'm up late waiting for a batch to finish so I can do my chloramine test and go to bed. I want to get a treatment in tomorrow morning so we'll see how this new routine goes.

There are still some loose ends but hopefully I am past this. The open items include reporting one more leaking bag. This will occur when I get a call from the supervisor. I have been told that they will pay for cleaning the carpet and floor so I will be renting a carpet extractor and tackling that. I am also supposd to get a call from my "personal contact" sometime this week. I guess in thinking about that it ticks me off since if she is my personal contact, where has she been through all of this?

This has been a stressing experience to say the least. In hearing from others it doesn't seem too outlandish either. I have yet to develop a trust in NxStage but I hope that I do. Without that, this isn't going to work. This past week I have been consumed with these issues and I can't take that. I'm holding out hope for this week and we'll take it from there.

[smcd23]

Did you find out what was causing the bags to leak - design flaw on the part of NxStage or some mishandling along the way in the delivery process? When my husband was on PD the supplies were picked up by the driver from the warehouse and delivered same day. We always had the same driver (except that one time I mentioned before) and he knew what he was delivering and knew what to look for when he picked the supplies up etc, and only once did we have a leaking bag issue, and that was due to manufacturing defect in one bag. I would be interested to know what you found in your investigation.

[M3Riddler]

So Home Hemo is supposed to make things better right? If my experience is par for the course, I think not.

I'll start by saying my nurse is absolutely phenominal. If DaVita had more nurses like her I'm sure they'd have more Home Hemo patients.

Beyond that things haven't started too well.

A couple weeks ago I got call from someone at Davita to confirm my PureFlow SL delivery and was told it would be a new machine and would come in 3 boxes. Great! However, when the delivery service showed up it wasn't in any boxes and it certainly wasn't new. It wasn't even wrapped and had been sitting in the back of a dirty van all day. The delivery person just grabbed it around the middle where the fittings are and hauled it in. Not terribly sanitary for a machine which is supposed to produce ultra pure water. When I went to set it up I found a big broken piece of the top tossed in the tub which didn't sit well with me. I suspected it had been dropped. The tub also wouldn't pull out without using everything I had to yank it out. I then tried to make a SAK and the controls didn't behave as usual. I couldn't get to the heater settings and finally it wouldn't drain properly. I told my nurse and she said she would contact NxStage for a replacement. Instead they gave her a hard time and didn't want to do it. Really? In the end they sent me just a new controller which made it better but I still am not terribly happy about it. Did they think I wouldn't notice the broken parts and that it didn't work?

With a dead Pureflow SL I needed to get more bags to replenish my reserve that I was using up. So the nurse called NxStage again and they ended up charging the center to ship them out. The reason we needed the bags was due to a dead machine yet they wanted to charge us? Not cool. In any event they told her they would be coming in this week which was ok since I didn't need them till next Sunday. Well, they showed up unannounced last Friday via UPS and they were dropped in the snow outside the house while we were at the center. No notification from NxStage that they were coming, the boxes weren't labeled as being medical supplies, nothing. Well, all the boxes were soaking wet and fell apart so I ended up with a pile of bags sitting on my garage floor. This time I called NxStage myself to complain. I spoke to a person who said that she would have someone contact me that day and someone would pick up the shipment Monday morning. It sounded nice if nothing else. Unfortunately no call ever came. Then on Monday the nurse had a voicemail saying that they were going to charge the center $250 to come and get them. Again, why? According to NxStage the bags were fine.  Sure, why not, just grab a bag up off the dirty garage floor, good enough. Makes me wonder what the mentality is at the factory. And still I have yet to get any sort of call back from NxStage.

In the voicemail she was told that the new shipment would come in 2 parts, one tomorrow and one part on Thursday. As to be expected UPS shows up today just as my partner was going to put the needles in. Sheesh! The UPS driver was nice though and put them in the garage, which was awesome. While on the machine my partner brought one box in and put it on the floor. After treatment was done and we were cleaning up she found the floor was all wet, really wet. As in a whole bag leaked and soaked everything. By now I was pretty upset and went to the garage to check the other boxes. Out of 8 boxes, half were leaking. Some outright leaking right through the box, the others saved by the outer bag but still useless. So now I have to rent a cleaner to get all the dialysate out my carpet and flooring, and I have no bags for dialysis...grrr!

I am really disturbed with the quality issues here. Bad customer service, bad shipping logistics, bad bag manufacturing. The thing I start to worry about is are there quality issues in other areas? Is the dialysate made correctly, what about cartridges? In addition, the last 3 days on this cycler (of which I have 2 because of a shipping screw up) I am coming no where near my UF goals and the machine is behaving oddly(the venous pressure is way off amongst other things). Do I wonder if there is something wrong with it too? I hesitate to have the nurse call since they've blown her off already and obviously they haven't done well communicating with me either. This is sad and shouldn't be happening

Please tell me this is a one in a million anomaly or I am going to be really scared. I have zero confidence in NxStage and unless something changes for the better, I am seriously thinking about going back in center as bad as that is.

Sounds like you are having a few hicccups... Dont worry it will get better.. Regarding the pureflow already being setup partly before delivery... Sometimes the shipping companies will set them up beforehand at the warehouse to save time. Some are trained on setting the cycler as well as pureflow up. This is something you should be able to find out.

Regarding the bags, you are allocated a certain amount per month as well as backup. If you reach this amount, Sometimes the center can be charged. This again should be able to be foud out by the lead training nurse or nephrologist by looking into their contract with NxStage.

Did you feel comfortable in the amount of time you were trained ? They should not release you until you feel totally comfortable being home and being able to operate everything.  They your center go over your system settings with you? If you received a new cycler rom Nxstage other than what you were trianed on, the settings need to be reprogrammed in. This could be causing some of the UF issues as there are settings that must be put in for initial prime and ending rinseback.

How are you pressures compared to being in center ?   What blood flow are you running at?    You should also have a customer service rep from Nxstage assigned to you specifically. I would call him/her up and explain what is going on. They will get to the bottom of it regarding the problems on their end.  They also should be able to tell you about the number of bags of dialysate you are able to get, even with issues.

It does get better... It is very stressful at first.

[fuzzyL]

I had a few delivery issues with them, but for the most part, not half the troubles as you--is your trainer/nurse involved?? We involve our and she has called them and given them hell.I still prefer home over clinic--the setting is far more comfortable, I sit in a nice recliner and watch tv--. My nurse,trainer told me too many "horror' stories of clinics that pull too much water or screw up your buttonhole.My care partner is my wife who is an RN and she cares about the person in that chair verse s a clinic person.You had a rough start but don't let it quit home hemo.

[Speedy1wrc]

fuzzy, my nurse is an angel and she is the primary reason I chose the center that I did. She has been calling NxStage the whole time I was too. She has gotten just as many confusing answers as I have. She was particularly upset with the damaged PureFlow SL but has yet to get any straight answers either.

I was not feeling well in center and was also having fluid issues. I experienced a lot of those horror stories too. Once I was even put on someone elses re-use dialyzer. That was a huge nightmare! All the more reason to want Home Hemo.

M3, we have been trying to get an answer on where the PureFlow SL came from and it's history but so far nada. My nurse is rattling chains up the ladder but no one seems to know anything about it. She hasn't given up though! As for the bags, we needed more because of the dead PureFlow SL. I would hope that NxStage would take that into consideration. However the bigger issue was them wanting to charge to pick up the defective ones. That has now been straigthened out on our end, but internally I am not entirely sure.

My training was phenominal! The nurse was the absolute best. I understand everytihng there is to know (I hope) about the machine and more. I am an engineer so some of the questions I had were pretty off the wall. If she didn't know the answer she always would call NxStage and get me an answer no matter how wierd or strange it was. I can be pretty anal, I mean analytical and I pushed the envelope on how the machine worked. We had lengthy discusions on pressure diferentials, pump dampening and how it related to the balance chambers and even why certain alarms would trip when they did. Training was a blast and I am sure my nurse is no worse for the wear because of me.

I feel very comfortable running the machine. When we were using the original cycler it didn't behave at all like the one in center and some of the oddities were just way off base. When I hooked up the second one I knew what the settings should be except one which was the factor for the rinseback volume. Oddly though many of the default setting were off and we had to reset them. The second cycler works fine with no issues.

I do have a dedicated customer service representative at NxStage and this was a point of frustration. Where was she through all of this? With every contact I made with NxStage I got a different person. That was annoying, but also my dedicated representative should have picked up on this whole  thing and taken control. I actually spoke with her yesterday and she didn't have a clue as to what was going on. I also told her that I had yet to get my promised phone call, which to her credit she did follow up on. Shortly after our phone conversation I finally did get a call from the customer service supervisor. She said she told me she would get back to me at the beginning of this week which is an outright lie. She had guaranteed me a call back within 24 hours and she said I could count on her, which I guess we now know was a bust.

My pressures are similar to in center. My arterial is exactly the same and my venous is slightly lower. They have been consistent all last week with the new cycler and so far this week too. I am satisfied that the new cycler is working properly. The warmer was replaced and worked fine the couple of days we used it prior to getting the PureFlow SL up and running. The PureFlow SL seems to be working much better than the last one but I stil have some questions for NxStage technical support which I will look into later this week.They aren't related to directly how the machine is running, but rather some other issues.

After speaking with the customer service supervisor it does seem like one issue has been fixed. They were randomly sending out UPS shipping notifications and now it seems that they've got that corralled. I am waiting for another bag to replace a leaky one and I got notice today that it shipped and I have a tracking number, which is a huge improvement over last weeks fiasco. Oh and the fact that I am getting a replacement bag is a very good thing too. I get another full monthly shipment next week too, so that'll be another good test of logistics.

I saved one leaking bag that was contained by the outer wrap. I haven't looked at it yet, but will. I am still trying to clean out the garage from all the defective cases and all the empty boxes from what we have used. I have a mountain of debris out there and it needs to go. Just off the top of my head I have or had 21 defective cases? Fifteen were the ones left in the snow and I think 6 more in several shipments that were outright leaking.Then 2 more that were lost in shipment somehow. I also am still working on setting up the house in terms of storage space and what we are going to use during treatment and how. We're still working out the kinks. I'll let you know what I find with the leaking bag.

Almost time to close the book on this one, but not just yet. I am going to hold NxStage to their promises and see if they can do it. There are a couple of outstanding issues and upcoming opportunities to see if they've gotten things back in order.

One thing I do know is that I am staying up way too late writing these epic posts and gosh darn my fingers are getting pretty sore too.

More to come?

[fuzzyL]

(yea, that is a lot of typing)--I do hope it gets better for you--we did too, have UPS leaving stuff on our porch without knocking and we raised heck about that-I do not want to be held responsible if that stuff "walks" away if we were not home- but we just had a snow storm in our area and it reminded me how glad I am not to have to get to a center in this weather--take care

[lmunchkin]

They always say, "in every batch, there is a lemon".  Sounds like you got a bunch of them Speedy!  So sorry!  I have a totally opposite experience with this NxStage.  No delivery problems, no probs with PF or the cycler.  Now we have had both replaced, but not due to defects, but they will wear out over time.   NxStage is always on top of it and I have yet to be disappointed!

Hope you stick with this.  Like fuzzy said, it is better than in-center cause you are in the comforts of your own enviroment.  Heck, you can do it in the nude, if you want.  Whoa now, that is a little too much info!!!!!  Lol

Seriously, sorry you are going through this.  But it will get better!  Don't give it up!

God Bless,
lmunchkin

[Speedy1wrc]

So far it hasn't been too convenient. Past issues aside we are now troubleshooting a possible cycler problem.

The issue is massive amounts of air bubbles. I start setup at about 7:30am and I don't start treatment till almost 9. I let it prime for its 15min then mute the alarms and let it keep running for at least another 15-20 miutes. I then do my snap and tap at least 5 or 6 times then let it run again for maybe another 15 minutes. I even have to snap and tap the saline line as it is massively full of bubbles.

Getting on the machine involves siphoning out air bubbles in the access lines and then I am on close to or even after 9. During treatment we have then had to siphon air off the top of the dialyzer still. By the time treatment is done and we're done cleaning up and putting stuff away it's after 1pm and once we didn't get done till 2 due to a pod error.

It's taking much longer than in center and then also 2 more days per week. We're far from being "there" yet.

Tomorrow we're using a different batch of cartridges to see if that might be the issue. We're going to do that for a couple of day's and then if there's no improvement we're on to our 3rd cycler in as many weeks. We're keeping an eye on the PureFlow SL too. It's a replacement already but now it's getting louder by the day. Something is starting to rattle severely and the dialysate flow is almost spurting as it comes out. We'll see how that pans out.

I finally got around to inspecting one of the last leaky bags to see what the issue was. As soon as I removed the outer wrap it didn't take much investigating. The was a huge semi-circular opening in the bag about 1 1/2" long. It didn't look like a rupture as was suggested by NxStage. They presumed the bags froze and expanded causing the leak. It wasn't a puncture, at least not after getting in the outer wrap. In the end I am not sure what caused this particular. bag to spew all over.

We're taking steps forward but just small ones. As I've said a couple of times before, I'll keep you posted.

[samsed99]

I am having problems w/leaking bags, too.  One bag had an abrasion that opened up as I removed it from the outer bag, one was missing most of the frangible, and one opened along a seam.  We live in Arizona so freezing should not be an option. I believe these are manufacturing defects. Unfortunately the leaks have ruined the new laminate floor. I switched from saks to bags bags because the Pureflow kept leaking and NxStage blamed everyone but themselves for that.   Are your leaks all from the same lot number?  Mine were from two different lots. 

As for the air bubbles I did have one lot of cartridges that appeared to be old, but were not expired.  I am saying old because the tubing was discolored. The fluid in them almost looked like it had foamed during the prime. With that lot I even had to snap the air out of the saline line during priming.   I did find, however that if I let the machine recirculate with the red 23 showing on the machine after I did the initial snap and tap, I got a lot more air bubbles and then had to snap and tap all over again. My nurse told me that after the initial snap and tap to repeat it immediately and then push the stop button and flush the ports and make final connections.  This helped. She explained that priming creates turbulence and air bubbles form.  After two back to back snap and tap processes along all the lines, with no time in between, should adequately eliminate the air and pushing stop and making the final connections right away will stop the priming process which creates the turbulence causing the air bubbles to form. Worked for me!

[Speedy1wrc]

The leaking bags were from 3 different lot numbers. Freezing was just a convenient excuse. If they were frozen in the warehouse they would have still been solid by the time they reached me. They were only in transit 2 days, so there's no way they would have thawed in that amount of time. Even still if they were freezing at the warehouse, fix the problem! My floor is tile but so much leaked, it soaked into the carpet next to it, which I simply haven't been up to cleaning. Without a super indepth analysis it appears to be a slice in the bag. Since the outer wrap is intact, I have no cluse as to how that could even happen.

I had a long conversation with NxStage on the bubbles/air problem and the solution is not good. I believe what they said but it doesn't help the problem. My dialysis room is at 68deg. It's cold enough here that I simply can't afford to heat it any higher. As it is I raised it from 62deg setback  since it doesn't get used during the day. The internal temperature of the cycler is 85deg. The temperature differential is too high and as the saline passes through the cycler it is being warmed then sent back into a cold saline bag. In addition the lines and dialyzer are also at 68deg so it's similar to when you pour hot water into a cold glass and you get all the condensation around the top. So until the whole setup comes up to temperature no amount of snapping will get rid of the bubbles.

So the solution is, raise the temperature in the room, which I can't do. I can't afford my heating bills as it is. The other solution offered was to simply start the whole process sooner and wait longer till it clears up. Right now it takes 1 1/2 hours to get on the machine and we still are getting problems with foam at the top of the dialyzer. Start to finish disregarding all the shipping issues I am still having it can be 6 to 7 hours which doesn't make sense. I can't see starting setup possibly 3 hours ahead as was suggested just to get it to work. Neither are reasonable solutions for me.

I also brought up a problem with the cycler where the settings change and I sometimes can't input the correct settings. The other day my flow fraction didn't behave. It is set at 38 and unless you're way off setting the maximum dialysate rate for the given UF rate then it should be what you set it at. That day it was 37 and nothing I did would change it. Suddenly a short time into the run I looked and it had changed to 38. NxStage couldn't give me any reason for this. Then today I set my UF goal for 1.8L, so I wanted to set my UF rate for  0.90L/hr. The most it would let me go to was 0.84L/hr. It should have let me set it for mostly anything  up to 1.8L/hr down to as little as 0.5L/hr which is the minimum. An hour and a half into treatment it suddenly let me bump it up to 0.9L/hr. Again, no explanation from NxStage. Frustrating!

Not to leave it there, when treatment was over I needed to start a new SAK. Before draining I always pull the tub out to see exactly how much is left. That way I can follow up on usage and also time how long to drain. I got a whiff of a burnt electrical smell which never is good. I had thoughts spinning around in my head that might be tied to the PureFlow SL making an increasing amount of noise recently. The PureFlow SL has been rattling more and more and it's getting quite nasty. The answer to that problem according to NxStage was that I wasn't smelling anything electrical since they already swapped it out once, so this one must be working fine. The only answer was that it was instead a plastic smell from the dialysate pump tubing since it may have run for 3 hours dry, even though I told him it didn't. So that too was a bust.


Speaking of shipping problems I received another courier shipment today. And once again, no notice. We are getting snow and it was soupy wet. Luckily I was just coming home from the Dr as they pulled in. If I wasn't that lucky we'd be back in the same place we were two weeks ago. I immediately called NxStage and got yet another new person. I asked why I didn't get a shiipping notification and was told that they didn't have to do that. I told the person that we've been through this all before and I was supposed to be getting the notices (and why) and all I got in respinse was that she'd look into it. I'm sorry, but with all the previous issues and talks with supervisors and my own PERSONAL represntative, we covered this way too many times. I can't count the number of promises that have been made that this was all in the past and all the guarantee's that this would be taken care of. All empty promises.

I sent my nurse a message that I think I may be done with this. I am on the phone constantly with my nurse or NxStage trying to fix some problem whether it be equipment, supplies or deliveries. It's a 24/7 nightmare. I start treamtent at 7:30am and finish sometime after lunch. I then have to start the ancillary support and troubleshooting problems. One day rolls into the next and honestly the gains aren't worth the headaches.

The nurse is coming tomorrow morning to help troubleshoot yet another issue and we are going to have a talk. I need a very good reason not to go back in center.

[Speedy1wrc]

Just a quick add-on. I did get a ship notice a couple weeks ago for a case of bags to replace one the last ones that was leaking. It was supposed to arrive today....it didn't.

[Speedy1wrc]

I don't even know where to start. when it rains it pours, no it monsoon's.

The customer service supervisor called yesterday. She had two to do items to take care of and she was calling with her answers. Neither answer was particularly good though. One question I had was why the heck did they spend $44 to send me a 3x5 card to tell me that I needed to send the old controller back? The answer was that they forgot to put it in the box. Plausible yes, but acceptable no. I asked why not call, or email, there had to be a better way to handle it. After a bit of a pause the only response I got was that it was a mistake. I can buy that, but it just reinforces my personal feeling that this is a big company being run like a small company.

The second issue was why can't they send shipping notifications so that we don't have surprise arrivals that end up sitting in the snow geting ruined. The explanation was that different shipments come from different places. A little testy I asked "so?". The reply was that their systems just didn't work like that. There were "too many"  differnet places and people involved. C'mon are we that backwards? That sure didn;t make me feel warm and fuzzy.

Moving on.

Now this is where it gets interesting. I began to think about the service tech's assesment of the bubble problems from yesterday. When we spoke, I bought into it. It made sense that a hot liquid into a cold vessel would cause an issue. Then I actually thought about that nonsense, and also decided to to either prove or disprove it. In principal what he said could indeed be true, except if you do the math as they say. I'm an engineer and  I like nothing better than a challenge like this. What came to mind was his statement that we were putting a hot liquid into a cold vessel. True, but at some point the vessel will warm up. We could talk about thermodynamics and heat capacity or we could just say a liter of saline going through small tubing will heat it pretty quickly. How quick? Well this morning when the nurse stoppped in we managed to still have a massive (dangerous) amount of bubbles after 2 1/2 hours. Not good. To top it off I decided for grins to warm the saline before priming. It was warming on a warming pad for an additional 30 minutes before we even started. So much for temperature theory. That he made the wrong assumption is no big deal, however it was the way he did it. The whole conversation we had, he did all he could to deflect any culpability of the machine rather it was a problem with the customer. And I hate to say it, but it eventually dawned on me too in the bigger scheme of things, a couple of degrees isn't a big deal. When talking about pouring hot water into a cold vessel we are really talking about 100 or so degree temperature differential. Busted. The nurses reaction was even more troubling. She did not want me to use the machine. When I spoke with her previously on the phone she did not realize exactly how bad it was.

Speaking about how bad it was, she also took a listen tot he PureFlow SL. Once again she was shocked at how noisy it was. Without hesitation she said I was going to get a new cycler and PureFlow SL one way or another. I'll break in here to say without her we would be sunk. She has gone above and beyond so many times. I am so appreciative of everything she has done. She deserves a medal for sure. She stayed for some time and we got it to the point where she felt we could use both machines, but I could tell she was not happy in the least. We also discussed a summary of where we are, have been and where we hope to go. She didn't want to see me going back in center, but agreed that to date this just hasn't worked.

Once we were settled in she left on a mission. She was heading back to the center and I could tell whoever she was going to talk to was going to get an ear full. She called me back a short while later after talking to a couple of high level peopple at NxStage. They had promised he that they would get in touch me me to cover my concerns. Let me guess, you were going to ask about our conversation? That would be great if they actually did call me. No, I wasn't holding my breath. She also spoke with the center manager and to get me back up and running as quickly as possible she was going to bring me her equipment and deal with NxStage herself. I told you she is awesome. The cycler she was giving me was the one we trained on for weeks, so I was confident it worked. The same held true for the PureFlow SL controller.

This is where frustration ran smack into depression. I still haven't powered up the cycler, but the PurFlow SL came up with an A833. In case you were rushing to look it up, it isn't in the book. I called NxStage and the tech I got was super. He had it coralled within just a couple of minutes. As it turns out the controller was damaged somehow and is now also dead. The J1 cable on the back came apart and that's all she wrote. Another controller (#4) is on it's way and shold be here tomorrow. Back to bags, YAY!

Could it really get any worse? I spoke with the nurse and she was almost in tears. I reassured her it wasn't her fault and thanked her profusely for all she has done. I cracked a few jokes for good measure and I think that helped. Honestly this isn't a made up story. Only the names have been changed to protect the innocent and suspects are presumed innocent till proven guilty in a court of law.

Sigh...

[Desert Dancer]

The second issue was why can't they send shipping notifications so that we don't have surprise arrivals that end up sitting in the snow geting ruined. The explanation was that different shipments come from different places. A little testy I asked "so?". The reply was that their systems just didn't work like that. There were "too many"  differnet places and people involved. C'mon are we that backwards? That sure didn;t make me feel warm and fuzzy.

What? I bet a get a metric shit-ton more supplies than you do and Fresenius seems to be able to manage them just fine (mostly).  Do you mean to tell me they don't have a set order/delivery schedule? Every six months Fresenius sends me a calendar of the order/delivery cycle and the night before delivery I get a call giving me my two hour window. The whole thing goes like clockwork: I place my order and get the delivery two weeks later and two weeks after the delivery I place my next order, and so on.

How in the hell else could you structure it? Sounds like they have no system at all. Multiple vendors are no excuse and I can tell you that with experience behind it because I used to be a sales coordinator.

Another reason I'm glad I stayed away from NXStage!

[Speedy1wrc]

Today was a good day. No kidding!

Dancer, you are absolutely right. It's not rocket science and the answers I was getting were totally unaccptable. By multiple locations, I was not referring to different vendors. I meant just different NxStage groups. and even within those groups different floors of the building or just different warehouses within the same logistics unit. They have to start getting it right.

So back to the good day.

I fired up the newest cycler this morning and lo and behold it worked. It worked well too. Most notable was the missing air bubbles. Snap and tap twice and we were running. I was elated. True, little things amuse me. Secondly no more jet engine sound while it ran. I guess I was taking it for granted that it was just going to be that loud. I can actually watch TV now since it isn't screaming in my ear. I did get one alarm, but that was totally my fault. Oops! I think and hope that this is the last cycler for awhile.

And true to their word a courier showed up with a new controller for the PureFlow SL. I quickly swapped the units out and got that one running since I had to make a new PAK and eventually a new SAK.  It too is amazingly quiet. Who knew? I am thrilled treatment isn't going to require a set of ear plugs any more. Could it get any better? As I am typing this I am acutely aware that at the other end of the house I don't hear it running at all. I'm almost giddy.

It got even better believe it or not. Shortly thereafter I got a phone call from an upper level executive at NxStage. We had a great conversation. He acknowledged the problems I had and that they were already working on them. He revealed some plans they have in the works to improve customer service, tech support and how customer interactions are handled. It sounds promising and he truly seemd interested in what I had to say. I voiced some other concerns and he promised to take action on them. If he follows through, and I suspect he will we could see some very positive changes.

Sadly the day ended on a slightly sour note when I opened my McKesson shipment. They got it all wrong with quantities and leaving stuff out. Fortunately I have enough supplies for now, but I will have to call them on Monday to get that squared away.

Today NxStage stepped up to the plate. If the equipment stays running I should be in good shape. The new units are markedly better in so many ways. For accuracy and clarity I did get the new cycler from the center, but close enough. NxStage seems to have taken my concerns seriously and are aware and working on ways to improve themselves internally so the customer experience is more cohesive. I can't go into details but watch as they roll out over the next weeks and months. And please, if you have concerns talk to your representative at NxStage and let them know about any problems you run into. I feel confident you will see significant improvements

[lmunchkin]

Wow, Ive never had problems like what is discribed here!  Well, if they do not get better for you, you can always go back In-Center or better yet, try Nocturnal.  Ive never used Baby K, but I know others have used it.  NxStage is not the only option available.   There are other options.  Have you tried PD?

If it doesnt get better for yall, then please, look into something else.  You must get dialysised, that is first and foremost!!!

God Bless,
lmunchkin