I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Meinuk on March 05, 2008, 12:10:26 PM

Title: NxStage Disappointment
Post by: Meinuk on March 05, 2008, 12:10:26 PM
 :rant;
Why is it that I can be trained, I can cannulate myself every night, I can trouble shoot my problems, I can chart my progress and the big problem that I have with Nxstage is their inability to get a SINGLE supply order right?  I have been at home since November - here is a synopsis of my delivery issues:

November - Delivery was 90 minutes early and delivered to my next door neighbors.  (all 59 boxes) (ok, maybe I'll blame the delivery service for this one)

December - didn't have me on the proper delivery schedule, I ran out of supplies and had to carry my sac from the clinic to work and then home.  (I walk and take the train)

January - my ordering schedule was changed and they never told me.  When I called in my order, it was too late - Someone had already decided to makeup my inventory.  (I now have 5 purepacks in a TINY NYC apartment)

February/March - Again, my order schedule was changed, (this time, I was on to them, and I kept calling) Once again, when I called to verify, my order isn't what I had asked for and the delivery service dropped the boxes off a day early in the rain on a NYC sidewalk - all while I am miles away oblivious to all of the screw ups.

What the Hell?  We go through all of our medical issues only to have this ineptness strike us down?  Why can't this company get a single order or delivery right?  Frustrating is an understatement.  I have now abandoned all hope, I'm stuck with them as long as I am a home dialyzor.  No one told me that the most painful part of home dialysis would be bad/incompetent customer service... :rant;

UPDATE:  Monday, March 10, 2008

This is still a rant.  But now there are a few more players involved.  NxStage reads IHD, and someone read my post.  And, rather than contact me (the consumer) they called my unit and spoke to my nurse to complain about what  I posted on IHD (they even e-mailed her a copy.)  So, I suppose that this is a case of biting the hand that feeds you.  (or cleans your blood) My nurse started the conversation with "the pen is mightier than the sword".  She was horrified that I called NxStage out publicly and out of respect for her - I removed the offending line from the original post.  Keep in mind that I have heard NOTHING from NxStage.  (point for being marginalized) 

Well, here it is, I have nothing to lose.  I'll wake up tomorrow morning and my kidneys still won't work.  So, let the chips fall where they may.  IHD is a public forum.  I am actually a strong advocate for home dialysis on NxStage.  But the facts remain the same, and I am horrified that I call them all day on Wednesday (when I heard of the order screw up) and I hear NOTHING, NOTHING on Thursday, NOTHING on Friday and I STILL haven't heard from them. 

But once they have been publicly called out, my nurse gets the phone call.  Of course my unit is trying to grow their home hemodialysis unit, and they need NxStage to be able to do that.  And let's face it NYC is a huge market.  I am aware of what happened to other home hemo companies.  I actually want NxStage to succeed.  But I want my cake an to be able to eat it too.  I want my deliveries to be as arranged.  I am not asking for anything extraordinary.  I am not asking for anything special.  I want NxStage to man up and call me when they have an issue with me - not my nurse.  She had nothing to do with the orders.  I did call to complain to her that there were screw ups (so, yes, she was in the loop)

This should be an interesting week.

FYI - After I spoke to the shipping company on Wednesday, I assume that they were able to telephone their driver as the delivery was finally made as scheduled on Thursday.  (Of course it wasn't everything that I had ordered)  Still, no call from either NxStage or the delivery company, I just sat at home on Thursday and hoped for the best.



Title: Re: NxStage Disappointment
Post by: paris on March 05, 2008, 12:55:20 PM
What a mess! Wouldn't you think the supply delivery would be the simple part of the whole thing?  It gets so frustrating fighting so many battles when you are already fighting for your health.  It seems like everyday there is another problem to solve and some days I just want to throw my hands up and quit.     Hope the delivery schedule gets better.  :cuddle;
Title: Re: NxStage Disappointment
Post by: okarol on March 05, 2008, 01:03:06 PM
I would write a letter or make a call:

Jeffrey H. Burbank
President & Chief Executive Officer
NxStage Medical, Inc.
439 South Union Street
5th Floor
Lawrence, MA 01843

Toll Free Telephone: 866-697-8243
Fax: 978-687-4809
Title: Re: NxStage Disappointment
Post by: Meinuk on March 05, 2008, 01:16:57 PM
Thanks Karol, already done.  I was hoping to find his e-mail address earlier but had to settle for snail mail.  They have a monopoly though.  We are stuck.  My only option for mitigation is to stop home dialysis.  I have no recourse in this case, I can yell and complain and nothing is done.  Each month, another screw up.  It really is a case of having to suck it up and put up with them.  (and I usually don't have a defeatist attitude)  All I can say is that each time they screw up, I'll post about it so other consumers will know that when they have delivery/order problems, they are not alone. 

Unless there is competition in the marketplace, we are just numbers on a spreadsheet.  We have no buying power.  When you read about people being marginalized - this is a prime example.  We are sick, dependent on numerous corporations to survive, and we are at their mercy.  We are not people to them, we are revenue (or loss in most cases) on a balance sheet.  Worse yet, our stories are marketing tools.  Look at the happy dialysis patients.  I am all for marketing home dialysis therapy.  I am just reluctant when my orders are screwed up and the deliver company tells me that the are just doing me a favor and no one seems to be available to speak to me when I call.

Nxstage just sees this as an administrative error - not what it is to me, the consumer - lost wages, physical stress and potential for injury if I get home, find the wet/soggy boxes on the sidewalk (if they are still there) and then have to carry them up the stairs into the house one by one, and then set up my machine for my nightly dialysis session.  Insult to injury, I believed their delivery schedule and cleared my calender for Thursday (the scheduled day).

I often self-check, wondering if I am being too demanding, in this case, no.  All I want is for my supply orders to be taken accurately and for them to be delivered as arranged.  This is a common business practice.  Why can't they get it right?



Title: Re: NxStage Disappointment
Post by: okarol on March 05, 2008, 01:27:21 PM
I know it must be frustrating. It doesn't seem like it should be so difficult. I hope you keep pushing for change - and I hope they listen, even if they are the only game in town!
I found this too: NxStage's Senior Vice President and General Counsel, Winifred L. Swan, Esq., contact by email (wswan@nxstage.com) - maybe she wouldn't mind forwarding a complaint.  :-\
Title: Re: NxStage Disappointment
Post by: Joe Paul on March 05, 2008, 01:51:04 PM
Sucks when we have to deal with crap like this to survive. I hope Nxstage soon gets it right for you, good luck  :grouphug;
Title: Re: NxStage Disappointment
Post by: tamara on March 05, 2008, 02:53:26 PM
Maybe when you send them an email send them a link to this page as well . Just an idea.............they will then see it's a few consumers and it may be interesting to send them a link to our site may be good for them too.
Title: Re: NxStage Disappointment
Post by: Sluff on March 05, 2008, 03:01:07 PM
Hope they start to get things right.  :grouphug;
Title: Re: NxStage Disappointment
Post by: charee on March 05, 2008, 03:09:09 PM
It seems its not just Nxstage here in Aus , I live in the country 5 hours away from my suppliers and we have the same problems , every month there is some sort of drama the worst was last month when we ordered but someone thought we had enough left and wouldn't need any but they didn't realize that we do 8 hours every second day and go through more than the average after lots of phone calls an emergency order was done and  it arrived the day before it was needed , to close for me . We are learning to keep a back up supply that they don't know about. Hope you get a good result with your letter :cuddle;
Title: Re: NxStage Disappointment
Post by: tamara on March 05, 2008, 03:13:58 PM
It seems its not just Nxstage here in Aus , I live in the country 5 hours away from my suppliers and we have the same problems , every month there is some sort of drama the worst was last month when we ordered but someone thought we had enough left and wouldn't need any but they didn't realize that we do 8 hours every second day and go through more than the average after lots of phone calls an emergency order was done and  it arrived the day before it was needed , to close for me . We are learning to keep a back up supply that they don't know about. Hope you get a good result with your letter :cuddle;


Yep, whenever I gave my supplier a stocktake I would always give them dodgy numbers in my favour sssssh :secret; don't tell them our lil secrets ok  ;)

Title: Re: NxStage Disappointment
Post by: petey on March 05, 2008, 05:09:11 PM
Meinuk,
Marvin and I would opt for calling or emailing one of the "higher ups" that were listed here (Karol -- you are a wealth of info -- what would we do without you?).  We think writing a letter won't get it because a letter is easily placed in "File 13."  Also, it sounds like some of your problems are with the delivery service, but, then again, NxStage is the one who picks the delivery service.  We would make sure that NxStage knew we were NOT happy with the delivery service they chose!  We would yell and scream, complain and fuss DAILY until somebody got it RIGHT.  Good luck to you!
Title: Re: NxStage Disappointment
Post by: petey on March 05, 2008, 05:12:15 PM
Marvin just reminded me...the first couple of months we were on NxStage, UPS brought our supplies (and the guy brought them in our house and all the way down the hall to Marvin's "clinic").  After about three months, though, NxStage switched to a local delivery carrier.  This service has been okay for us, too -- and this guy will carry the boxes down to Marvin's bedroom/clinic if I ask him.

Our delivery carrier also calls ahead (a couple of hours) on the day of delivery to double check and make sure we're home.  Could they do that for you? 
Title: Re: NxStage Disappointment
Post by: Meinuk on March 05, 2008, 06:26:44 PM
Thanks Petey and everyone,

I have no doubt that my voice was heard today, as it was when I posted my training diary.  People from NxStage and Davita read IHD.  Like I said in my earlier post, I know that there is no recourse, and honestly, I am sick of hearing "I'm Sorry".  I've just decided to go public with my disappointment.  The deliveries are supposed to be scheduled and attended.  The ball has just been dropped yet again, and I'm calling them out on it.

I got home tonight to find out that the delivery wasn't made.  No call, nothing.  (or maybe the boxes were left and subsequently stolen.  I have no idea, an no one has bothered to tell me.)

So, tomorrow morning, I'll wait for the pre-arranged delivery.  I already know that it is not what I asked for, so maybe I'll get some more pure packs  - I can build another wall in my little apartment.
Title: Re: NxStage Disappointment
Post by: petey on March 05, 2008, 07:02:34 PM
You go, Meinuk!  Don't let up on them one iota!  :boxing;  Stay after them until they get it right!

I get soooo tired of hearing "I'm Sorry," too, when I have a problem.  "Sorry doesn't get it -- what are you going to do to fix it?  Tell me that and then you won't have to be sorry!"
Title: Re: NxStage Disappointment
Post by: Meinuk on March 10, 2008, 05:45:24 PM
 :bump;

There has been a development.  I've updated my original post.
Title: Re: NxStage Disappointment
Post by: Zach on March 10, 2008, 05:52:06 PM
Apparently, NxStage is having a bad couple of months:

http://finance.google.com/finance?client=ob&q=NXTM
 8)
Title: Re: NxStage Disappointment
Post by: okarol on March 10, 2008, 05:57:32 PM
It's too bad the consumer division doesn't see this as an opportunity to publicly acknowledge and correct a problem. It would build so much goodwill, and would also provide a good training example for the future. I know you want them to succeed, but this delivery problem could be the reason they don't. Do they assume that you are a housebound patient, sitting at the window waiting for the delivery man to come by?
It's just downright RUDE for them to ignore your attempts to contact them.
Title: Re: NxStage Disappointment
Post by: paris on March 10, 2008, 06:58:36 PM
Meinuk, I learned first hand that NxStage reads the posts on IHD.  I met the East Coast rep when I was at a clinic meeting the regional NxStage representative. She asked how I had become so familiar with NxStage and I said because of IHD.  She immediately started talking about Epoman and Bill Peckham.   I mentioned I had a friend in NYC who does NxStage without a partner and she had heard of you.   It was a strange encounter!  Sometimes we forget HOW  public this forum is!  But if they don't like what is being said about their company and product, shouldn't they contact you and try to make you happy??  This site is one of their biggest supporters and you, especially, have said so many good things.  Epoman loved NxStage.   It will be interesting to see if they ever contact you personally.  Keep fighting :boxing; Your battle will help those who will choose NxStage in the future.   :thumbup;
Title: Re: NxStage Disappointment
Post by: KT0930 on March 11, 2008, 05:20:46 AM
As Karol said, it is so frustrating when things like this happen, and then you had to stay home from work for an entire day to wait for the shipment because it wasn't made correctly on your usual day. Don't they realize that you chose NxStage so you could continue to live a semi-normal life in spite of kidney disease? And that part of that normalness is attempting to hold down a job? How is it that people who screw up on their end continue to have jobs, but we have to constantly be in fear of losing ours just so we can get the supplies for a treatment that keeps us alive? Keep  :boxing;, we're with you 100%!
Title: Re: NxStage Disappointment
Post by: KR Cincy on March 11, 2008, 01:05:16 PM
It's crazy how different experiences can be. I've had nothing but success with NxStage...all my stuff arrives on time (assuming I order on time, which I usually do!)...when I've had technical issues, they've handled it immediately...and I've met the local rep a few times and he's always wanting to know what's working and what's not so he can pass it along.

Meinuk, you KNOW I'm rooting for you and I hope you get this supply/delivery issue sorted out.
Title: Re: NxStage Disappointment
Post by: petey on March 11, 2008, 02:20:54 PM
We've always had only good experiences with NxStage, too, but if that ever changed, you better believe they would hear from me.  Stay on them, Meinuk!
Title: Re: NxStage Disappointment
Post by: petey on March 13, 2008, 07:12:32 PM
How's it going with the NxStage deliveries, Meinuk?  Any better?
Title: Re: NxStage Disappointment
Post by: kitkatz on March 13, 2008, 10:58:43 PM
Want to borrow a big stick?
Title: Re: NxStage Disappointment
Post by: Meinuk on March 14, 2008, 08:24:58 AM
Kit, thanks for the offer of the stick.  But I think that my posts and phone calls were pretty effective. (although I have still to receive a call back from last Wednesday)

I went to my unit to drop off my blood work this morning and my nurse just started laughing and called me a "naughty, naughty girl.."  Which is an endearment in my book!  I have to say that my nurse is amazing.  Everyone in my unit is buzzing about it and we are taking a "wait and see" attitude.  My next order is on the 26th.  I am going to ask for written confirmation when I place my order.  We'll see.

I blogged about my perspective on this whole situation on Bill's Blog http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/how-far-is-too.html  (and over there, I linked to this thread so that people read get the details)

I'm still annoyed, but the fact is, I love home dialysis, I feel amazing and maybe it is because I feel good that I am able to point out when I feel that things are not as they should be.

Title: Re: NxStage Disappointment
Post by: kitkatz on March 14, 2008, 09:45:22 AM
It seems ridiculous to me that these people who do not have kidney disease but are supposed to be assisting people who are ill cannot get the deliveries correctly done.  It is not like you can skip a treatment or just forget it because a delivery is wrong or late. "Sigh"  So people get your act together!
Title: Re: NxStage Disappointment
Post by: KR Cincy on March 14, 2008, 10:37:12 AM
Anna...I love that your nurse in on in this. While I love being an easy patient to get along with, I'm sure my nurses would be with me in a struggle like you are having. I'm now waiting for a NxStage delivery that was due yesterday...apparently they have gone away from UPS for deliveries to some other company. They called this week to set things up, but I was (my fault here) late getting back to them...she thought she could get it out yesteday, but apparently not. It's my hope of hopes that we aren't at the beginning of a situation like yours becuase, as you know, the extra stress is just not good.

Hope things are hoppin' in NYC and that you are well!
Title: Re: NxStage Disappointment
Post by: Meinuk on March 14, 2008, 01:48:53 PM
KR, they do try.  I just think that somehow, for the past few months, my account with NxStage has fallen through the cracks.  I don't deserve it, and it is time that they pay attention to details.  Let's see how next mont's delivery goes.  Of course, all of my Fresinius deliveries have been perfect - which only makes the NxStage errors more glaring in comparison.

I have mad respect for my training nurse.  She is no nonsense, a professional woman who works full time, and has six yes, count them, six children.  I always feel bad when I have to call her late in the evening, but she is always cheerful and always understanding.

So, things keep on rolling along in NYC.  It was a beautiful day today, after I dropped my blood off at the unit, I took a long walk along Central Park South, coffee in hand, feeling healthy, surrounded by sunshine and some trees...  can life get any better?

Anna
Title: Re: NxStage Disappointment
Post by: KR Cincy on March 14, 2008, 01:55:20 PM
Well, I don't ask that last question much anymore, but at least I know it can get worse!!
Enjoy the day and the weekend...can't wait to chat with you again!
Title: Re: NxStage Disappointment
Post by: Russ on March 16, 2008, 02:14:01 PM
Several months ago we had an incompetent rep handling our region.  Someone else is handling our area now and it seems things are a little better regarding supply deliveries.  I think their internal computer system (order tracking/customer notes) is a bit lacking too.  I want NxStage to succeed too.  I feel so much better with NxStage than when I was in-center.
Title: Re: NxStage Disappointment
Post by: skyedogrocks on March 17, 2008, 05:15:57 PM
Nxstage annoyed me these past 2 weeks.  We are on a bi-weekly delivery schedule, I hate having all those boxes in my house and there is not a lot of room for storing them.  However, the past 2 months or so our schedule is all messed up and we have no idea why.  We have 7 freaking cases of cartridges and 200 freaking drain lines. We have told her no more cartridges and lines for a while, but we keep getting them.  So last week was all messed up, we were supposed to have our bi-weekly delivery, only got a week (but 2 freaking cases of cartridges!), then we called and were supposed to get a UPS delivery for a week and then next week get set up on our regular schedule.  She talked to Rob's nurse and he has to go to his dialysis center to pick up the freaking boxes and his nurse tells him he'll get a delivery next Tuesday.  I call the rep steaming mad and she says he's getting a delivery on Friday.  MAKE UP YOUR MIND PEOPLE!!!  So annoying!!!  I guess they are bitching about the log sheets, they need to get them faster (we give them to the nurse once a month or when Rob see's her.  I felt like telling her I will drive them over to her in person, NxStage is only 2 towns away from me.

As much as they annoy me with the deliveries, it makes Rob feel tons better and that is all that matters to me.
Title: Re: NxStage Disappointment
Post by: Roadrunner on March 22, 2008, 06:34:56 PM
I think the stock situation is hurting them.  The number of their clients is increasing and I don't think they are increasing their staff.  I had someone call me before the last order was due and they said they were trying to help out.  I got the feeling they are overwhelmed with the amount of work.  If each area now has a different carrier it must be hard.

I don't know what forms you are using but I find them counter-intuitive.  Some items ask for number of units and some ask for boxes.  It makes it hard to count.  Why can't they just ask how many boxes of cartridges you have.  They are going to send you full boxes and not a specific number of units.  I listed I needed 4 SAKS since they asked for units, and they sent 4 boxes of SAKS. 
Title: Re: NxStage Disappointment
Post by: kitkatz on March 22, 2008, 10:50:08 PM
Have they fixed your situation yet, Meinuk?
Title: Re: NxStage Disappointment
Post by: Meinuk on March 23, 2008, 07:30:50 AM
My next order isn't until the 26th and my delivery is for April 3rd.  So, we'll see. 

I am amazed when I read posts about paperwork.  I've never been given any inventory/order sheets.  (I had to make my own) All I have ever gotten form nxstage is four one page list of dates for order/delivery.  (they look exactly alike, they are not dated upon issue, and in my case, two were wrong. They were mailed to me in December, January and February)

Last week, my nurse placed a conference call between my rep and myself, and brokered a deal that I e-mail my order so that I have written proof.

I'll post all about my order and delivery when they happen.
Title: Re: NxStage Disappointment
Post by: Roadrunner on March 24, 2008, 07:02:33 AM
When we (it's a partnership) started home hemo we were given a NxStage folder like salesmen give out.  Has the a picture of the NxStage on the cover, inside is a card listing the customer support specialist, phone number, fax and email info.  It also included a delivery schedule that had our name, address, phone and account number on it.  It also included about 1/2 dozen "Home Inventory Forms"

It lists the items to be ordered and asks for what you have on hand, the amount you need and the expiration date.  It then has a place to write notes to the Customer Service Rep.  You are to call or fax or email them this info.
Title: Re: NxStage Disappointment
Post by: Rerun on March 24, 2008, 08:16:45 AM
Maybe you'll get a transplant and they'll have one less customer.

I've also emailed BAXTER Dialysis Supply Co., to see if they can come up with a solution.   :thumbup;  You are correct.  If we can get some competition going then we have a choice.