G Ma will try NxStage

[G-Ma]

Read what I have said before flip...NxStage is trying to sell equipment...they have teemed with Davita and if you are getting nowhere with Davita it is in your best interest to contact NxStage..one reason being..they have many more centers and want Davita to treat every patient individually...not alike as a group and can make suggestions (strong ones) to Davita on what to do for their patients.  But if you want to sit back and take your no...go ahead.
Ann

[flip]

It's still hard to forget that Davita owns part of NxStage. Everyone I've talked to tells a different story. I've heard that Fresenius is working on a portable dialysis machine similar to NxStage.

[paris]

My neph's office doesn't work with NxStage, but I called them on my own.  I have two reps that I have contact with. One met me at the center in Durham and showed me the set-up, met with patients who were training.  She emails me regularly and wants to set a meeting with my neph's office to "get them on board".   The office in Durham does say Davita on the door.  My neph trusts me and knows me well enough that if I decide NxStage is what I want,he will support me.  Flip, call NxStage or email them directly just to get information.    Thanks G-ma for sharing your training with us.  It really helps to hear how well you are doing.

[G-Ma]

Well, today life sucks....not NxStage, I just didn't want to horn in on anyone elses arggggghhhhh....lab results sucked and I am NOT doing anything different than last time, just eating less because I'm not that hungry, not eating anything different or drinking..........the only thing diff is those d___ other binders Fosrenol.......and mail order pharm sent 6 mo worth and I don't want to take them any more, I want Phoslo back, no one knows why they switched.....now got another order of expensive Sensipar and should stop that.........phos sky high, albumin low, hemog low...losing blood during training...took double EPO today...possible iron next week...more labs next week.....I want to run away NOW to somewhere nice, calm and without dialysis.

[monrein]

   

[pelagia]

Oh G-ma, I hope that what is happening this week is just a part of your pathway to success!

P.S. Phoslo is calcium acetate and Fosrenol is lanthanum carbonate.  I don't think the mail order pharmacy has the authority to switch those.  Have you called to complain or get an explanation?  It's their mistake and they should rectify the problem.  You might just mention that you are going to report them to the XXXX.  You need to find out who regulates mail order pharmacies in your state.  Is it NC?  If so it could be the NC Board of Pharmacy, see http://www.ncbop.org/
 

 
   

[G-Ma]

Sorry...I stated that badly...the Dr. wrote a Rx for Fosrenol 2 months ago and mailorder  sent 6 mo supply so I would have to dump that if I can get the Dr to give me Phoslo again or is the calcium whatever the reason for the change?  Nurse didn't know so as soon as I see neph again that will be the first question.  It was the neph in center that made the change but they all work for the same group.  Today I feel like a Guinea pig..

[RobinM]

Hi G-Ma,

I'm on NxStage too.  My nutritionist had me switch from Phoslo to Renagel because of the calcium in Phoslo.  I take three 800mg Renagel tabs per day and it works well for me

Robin

PS  Hope your labs (and your days) improve soon.

[G-Ma]

Thank you Robin...I'm on my first 3 day wkend...I can't believe no D for 3 days? so I'm trying to avoid fluids etc...boring.  Tues is my final test...pray for me everyone so I get it...trainer said I have to have a perfect score to graduate so now I'm worried about that.  That's me...yeah I'll be the presidential worrier....    

[lola]

Hang in there G-Ma, good luck on Tuesday . Flip I'd find out what Dr follows the Nxstage pts and talk to him. When Otto went thru training we made it VERY clear to them that I would not be there everyday and they were fine with it. 

[silverhead]

If I remember right, the final test is "open book", so you shouldn't have any problem with it, good luck anyway.......
Tom

[G-Ma]

Thanks....however...I have a brand new trainer and she is trying to outdo the other one...........grrrr......some things I have been double and double checking......

[pelagia]

G-ma you can do it! 

[G-Ma]

thanks I needed a cheerleader today............they got me used to every day D and today is my 3rd F Day off and I feel like S, even with staying off fluids etc..........

[RobinM]

I think I might have missed something, but why are they keeping you off dialysis?  My center makes a big deal about never going more than one day without dialysis.

Robin

[G-Ma]

Yes, ND may have been poor in dialysis but they insisted on no more than 2 days off.......and here doesn't seem to make a difference...apparently the trainers don't work on sat, sun or labor day, therefore who cares about the patients.....trainer told me to go to the er if I don't feel good.......yahoooo......oh that's right..the trainers work for davita....must be the difference...they make the rules just don't have to honor them.

[monrein]

O I so sympathize with you G-Ma.  I dialysed Friday and then today (Mon) and the two day gap kills me.  Three days would be hell.  CRAZY system is all I can say.  When you're home, you'll be in charge.  Yeah.

[del]

The nurse who trained myself and hubby for nocturnal would not let hubby go anymore than 2 days without dialysis. ( he wouldn't anyway!!!)  When she is training and a holiday comes up she works that holiday and takes a day off when she isn't training!!

[jbeany]

Hope you feel better today!  i had to do that when my graft clotted once, so I know how miserable you feel!

[G-Ma]

OMG.....       .........today was a day from H. at Davita..................I graduated and if I had not I would have gone back to incenter...if I had known how the day would progress I would have quit.    Did my D....took the test...closed/no book...trainer had very little clue on what to send home with me and old trainer and secrtary did NOT share their knowledge with her...she called plumber, made arrng for him to come out...he got here and no unit was here yet so he could not do anything...she did not know this but the other people in the office did.......she told me a NEW cycler would be delivered to me..ha ha...she called when courier was on the way and apologized all over the place because it was not a new cycler and was not clean...WTF? said I'll clean it in the morning..so you  put it in the warehouse dirty, used, don't clean it or cover it or store it properly...I was told over and over not to let lint or anything inside the cycler...guess what??? oh yeah...my son opened the door, put a finger inside and brought out a load of dirt/dust...stupid me did not want anything that dirty in my house so I cleaned the outside..should have left it the way it came but I know how it looked...yes, call me not a happy camper....oh yeah, Davita in Charlotte doesn't provide recliner as I said previously so today I asked well do you have a used one?  Oh NO we don't have any used ones but you do need one...out of whose pocket? not mine.....and big surprise...Davita doesn't provide a ..get this...thermometer!!!! so I had to go to the drugstore and purchase one... oh yeah, the pureflow chassis was obviously WELL used and stored dirty and has a broken hinge on the bottom so door doesn't close correctly...got a load of stuff together for me...did not use a checklist and other trainer periodically asked did you give this or that??? well, son and I got everything put away tonight and no, ZERO, PAKs for pureflow but 3 cases of saline and only two days worth of dialysate...yes, some day we will laugh, just not tonight......I'm going to call NxStage and see if they would like to know what kind of equipment or how dirty the equipment is being delivered with their name all over it...wonder if they will be ever so proud....Oh yeah, they all came in laughing and smiling and asked "how was your weekend"....I said "how would yours have been if your kidneys had not worked in 3 days?"...do you know they did not mention the weekend again...............OK...I'll quit screaming now and go to bed...maybe Ambien will work tonight....trainer is supposed to be here tomorrow morning at 8 am...doesn't know she better be bringing dungies.....I will NOT help her clean that stuff.   

[silverhead]

Wow, I would be on the phone to NxStage ASAP, there is no excuse for dirty, broken equipment, and I'm sure NxStage will not accept that kind of situation. Also tell them about the trainer situation you had to go through, I'm sure NxStage again will not be happy with it......
Tom

[monrein]

That is disgraceful G-Ma.  I would document this situation in writing and send it to anyone who might have some power to reprimand (read fire) people.  Too bad you don't have photos to accompany the disgusting description.
 

[G-Ma]

Thanks Tom and Monrein, actually I just hit send on the documentation and email to my contact at NxStage.  I called her this morning at 8 AM, she is shipping a new chassis and wanted instant contact if there was trouble with the cycler.  Training nurse had come out and cleaned on cycler and chassis from 7:30 AM to 11:30 AM before I could start my run.  There were a couple of alarms but nurse was able to take care of them, they were due to the dirt etc.  Run went good.  Scale did not work, lots of items from Davita were missing so nurse is coming out tomorrow morning again bringing supplies and watching a good run and cycler one more time.  I found out that because I had a forced Monday off I have to go at least through Monday to get another day off...poor arm.. .   New trainer also had told me I could do 3 on, 1 off for my runs and now found out, no no...have to do 6 from Sun to Sat....grrrr.....Have a good night all.
Ann

[G-Ma]

Well, NxStage said yesterday that they would send out a new chassis as on this one the door hinge is broken and today the new PAK is expired..    control panel is shot so trainer called and Monday I get a new chassis and control panel and we had several alarms that we could not get out of on the cycler, probably still dirty so trainer called Davita and they will bring out a new cycler next week, hopefully we can limp along until that time...life is so much fun.........today Catheter was rrrrippppeeedddddd out...8 shots of Novacaine and still felt like they pulled my spine out through my chest.....the Dr. said it's really deep and lots of scar tissue..it was in too long.  Did D after Dr. appt and started fading away an hour into D so discontinued now for today, taking a pain pill and to bed..............I LOVE NXSTAGE finallly.....don't have to leave the house, take my time setting up etc etc.........

[kitkatz]

I think a good old fashioned butt whipping needs to happen. You may borrow the stick!