G Ma will try NxStage

[jbeany]

I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.

What, are they just trying to discourage you from starting at all?  Most of that is completely wrong.

[petey]

I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.

What, are they just trying to discourage you from starting at all? Most of that is completely wrong.

Yep...you're getting some misinformation -- or at least, that's not the way it works with us.   Max removal for Marvin is 3.4 kilos per session.  CAN turn off UF any time.  Buttonholes are great!!  (use them and love them), blood flow rate is 450.  Treatments run from 2.5 to 3.5 hours (depending on fluid on -- Marvin's average is about 2.45)

[flip]

I did find out that they only have 2 people on NxStage and they try to steer everyone to PD. I guess they make more money on it.

[cherpep]

What?!  Flip?!  What are they talking about?  I take off an average of 2 kilos per session, the other night I took off 3.  My average time on the machine is 3 hours.  My clearance is great, my labs are great - is there another clinic you can check with for support? 

[Wallyz]

That's horrible flip. It has to do with the comfort of the trainers, and so you are getting screwd for their inability to change.

Anyways, G-ma, when I started NxStage, the center sent me three medical scales.  I will happily send you one, let me know here by sending me a PM, and I will mail it to you.

[G-Ma]

Thanks wallyz...I'll let you know......flip..wrong wrong...even I know most of that is wrong...I am running at 500 now on 15 needles...start at 200 for a few min and today I'm great...no headache..upped my dry weight .5 kilo and forced myself to drink.  If you want the name and number of the NxStage """person""" that got this sorted out for me, pm me and I will give you her info...a fantastic person and she will probably fly into where you are and get this sorted out..NxStage wants training all done on a ""case by case"" basis...not all in one box.  I can tell you that you will be happy with what she tells you.  Next week I think I'm going to start working on buttonholes, today the nurse followed me home and got my water sample.  My dau in law cannulated me and did fantastic so I have a back up with that and NO headache so I can study.  I am so worried about not remembering stuff and I keep making notes.  Flip..serious now...if you want to train in Charlotte, I have a couch and a recliner free for your use and I think you  would be thrilled with the trainers.  Think about it and let me know.  I think you are only af few hours from here.  Whooppeee...we got to bring home the hoses today...what a thrill huh petey and lola? should I name them too??      ok, now I'm going to work on my storage problem.... still waiting for my grrrr icon?

[funnygarcia]

I'm sure it's local rules......need a partner, can't remove over 1 kilo per session, can't turn off UF easily if you cramp, no buttonholes, 6 days mandatory, low dialysate flow, only 140 dialyzer available, no heparin pump so 2-2.5 hours is the maximum treatment.

Bull ca-ca...

sounds like they are giving you the story and dance to push you into choosing THEIR treatment of choice.

We ran into an issue when hubby first looked at home hemo. Coming from a Fresenius center to a Davita training site, hubby said he wanted NxStage.. they had someone look at our electrical (said they had to install a dedicated GFCI outlet) and storage issues to get approval. That tech said we would want Nx Stage because we really had no room for the Baby K, RO tank and mountain of supplies compared to NxStage.

Neph had to sign an order saying he needed more dialysis. She signed it but said it was technically illegal for the Davita center to require the order to begin with.. this was all tied with billing. The director said they would not get paid unless neph signed the order.

Then we wait.. wait wait.. to hear a call back on the VERDICT, can he be allowed to do home hemo. Director doesn't call back and finally we leave a ton of messages.. "Oh yes, I think you will do nicely on the Baby K!" but umm that's not what we want?   

Then he said they couldn't adjust their training schedule to meet hubby's needs. He would have had to miss student teaching for 4 weeks.

Told them we would have to wait until after graduation.

Ended up we moved to CA, moved back to MN a yr later and called another Davita training center. Totally different attitude, when do you want to start? No need for anything different for electrical, our choice of machine, no weird demands for billing. 

Funny thing.. they are actually run by the same clinic as we originally went to.. this one just opened a few months ago. 

[cherpep]

When I first investigated home hemo, I was at a Fresenius clinic.  We went and spoke with the coordinator/trainer, and she told us that we both (patient & partner) would need 6 weeks of training minimum, and that the training would be from 8am to 5pm, every day.  There was absolutely no flexibility with the training schedule.  So, in other words, my partner and I would both have to take off 6 weeks of work in order to get trainined for home hemo.  That was ridiculous!!  They only offerred home hemo on those big Fresenius machines, and those machines do require special electrical and plumbing changes at our home.  We walked away feeling pretty hopeless. 

My neph actually found the NxStage solution through Greenfield Health Systems (I think they are local).  Hallelujah!!  No electrical or plumbing changes were necessary, training for 3 weeks, half days, and my partner was not required to be at every session.  The nurse came to our home for our first home hemo session and basically just watched us do our stuff, and filled out an evalution based upon our independence and setup.  It could not have been a better experience.  Within a month, I was doing home hemo. 

[pelagia]

This is strictly personal opinion and IHD need take no responsibility for my statements:

If you are an administrator of one of these places that is constantly finding ways to make it difficult for dialysis patients to take control of their health and you happen to be reading this, please take note.  We can talk to our local legislators.  We can go to Washington.  We can mobilize the media.  There is strength in numbers.  All it takes is organization.  The internet is a powerful force.  Do you want your clinic to be singled out?  Dialysis is difficult enough without putting dinosaurs in charge.

Please read this and then pass it along to your supervisor.

[G-Ma]

OK, 2nd week is down.  Nurse cannulated me today and had to dig, sure wish my dau in law had been there, oh well.  Grndtr and I did the set up and only stumbled once so ok.  I'm still sure I'm not ready to do this alone at home yet but at least I'm remembering things which I think is good. I met the neph yesterday who said training is as long as I need, there is no set period, generally 3 to 6 weeks, but wants me to be comfortable with everything.  After I have setup and cycler down pat they will start training me on my button hole since we are having trouble keeping my access from rolling.  Hopefully next week will be a walk in the park.  Have a great weekend all of you.
Ann   

[kitkatz]

When I first investigated home hemo, I was at a Fresenius clinic.  We went and spoke with the coordinator/trainer, and she told us that we both (patient & partner) would need 6 weeks of training minimum, and that the training would be from 8am to 5pm, every day.  There was absolutely no flexibility with the training schedule.  So, in other words, my partner and I would both have to take off 6 weeks of work in order to get trainined for home hemo.  That was ridiculous!!  They only offerred home hemo on those big Fresenius machines, and those machines do require special electrical and plumbing changes at our home.  We walked away feeling pretty hopeless. 

My neph actually found the NxStage solution through Greenfield Health Systems (I think they are local).  Hallelujah!!  No electrical or plumbing changes were necessary, training for 3 weeks, half days, and my partner was not required to be at every session.  The nurse came to our home for our first home hemo session and basically just watched us do our stuff, and filled out an evalution based upon our independence and setup.  It could not have been a better experience.  Within a month, I was doing home hemo. 

EXactly what happened to me. However the new Davita clinic will look into home hemo for me now.  We shall see what happens. I will be damned if I am going to give up my job for dialysis. Ain't gonna happen!

[G-Ma]

Keep fighting for it kitkatz...

[lola]

  G O G-MA G O 

Flip I think I nedd to come there and

[funnygarcia]

OK, 2nd week is down.  Nurse cannulated me today and had to dig, sure wish my dau in law had been there, oh well.  Grndtr and I did the set up and only stumbled once so ok.  I'm still sure I'm not ready to do this alone at home yet but at least I'm remembering things which I think is good. I met the neph yesterday who said training is as long as I need, there is no set period, generally 3 to 6 weeks, but wants me to be comfortable with everything.  After I have setup and cycler down pat they will start training me on my button hole since we are having trouble keeping my access from rolling.  Hopefully next week will be a walk in the park.  Have a great weekend all of you.
Ann   

 

woohooo way to go!

Once the buttonhole is well established things will go smoothly-- and quickly!
Hubby had existing buttonholes before we started training, it's routine procedure at the center he had in California. Once they were established he did his own sticks (in center) -- really all he needed to learn was the machine and making batch.

After awhile, setting up will seem like an easy routine. You will be very familiar with all of it before going "home".

Took us 2 weeks and 2 days of training, nurse said we were at a tie for the shortest training period. It helped to read posts here, I knew what to expect and passed it along to hubby. But in some things I think we went a little too fast ,thank goodness we have the machine manuals and training book handy for those pondering questions..

 Now which tube was it that has to clot before spinning??? Flip Flip Flip ohhhh right.

And the always fun one.. what the heck is alarm code # and how do I fix it eeeeeeeeeeeeeeeek!

Flip Flip Flip-- ohhhhh not a big deal afterall 

[G-Ma]

Thanks lola and funnyg...generally I love a good race but not this one.  Still have that big fear monger looking over my shoulder.  I'm writing and rewriting my notes to try and remember.....grrrrr....

[pelagia]

G-ma.  I found this grrrr for you!  It's clearly grrrring, but kinda cute at the same time. 

[G-Ma]

Thank you so much...I love him... or her....   grrrr...now how do I save to use???

[pelagia]

I have a mac and when I click on the little symbol, it downloads.  Don't know how it works on a pc. Then it can be used as an attachment.

To get it up to the top with the other emoticons for inserting in text when composing a reply will involve an administrator. 

[G-Ma]

Administrator...please my grrrr???

[G-Ma]

Wellllll week 3 begins and is this Fri the 13th?.........all the way to Davita In Home this morning...30 min, I talked myself through the set up...alone today and was really going to get this down.........welllll I walked in, Trainer Sargent was there, said you are all set up, we have to be at a meeting at noon so have to have you done....within 5 min she threw the needles in and yes I was home by 11.....I guess tomorrow is another day, and then my trainer found out she is clueless about what all to train so I guess she felt like a..you know what...I was supposed to have been doing 2 tests a week, had no idea so told me to come home and do 6 tonight....sure, and when pigs fly?? I am going to sit down and relax first.........well this is relaxing of a sort...ranting and raving.......    Tell me why don't they TRAIN the Trainers before they throw a patient at them?  Now they are pointing out that I am the first person my trainer is training...yipeee gum drops.   

[G-Ma]

OK, another week down and trainer thinks I'll be done a week from Monday and this past week I feel all is starting to click and I feel so much better...yesterday after D, took my grndtr to a univ an hour and a half away to pick up a friend, then drove home, spent the evening with them and then spent all day today with my dtr in law and other grndtr at Concord Mills Mall shopping and walking the whole mall a couple of times.  I have not done something like this in years and I'm still sitting here talking about it all and havn't even wanted to lay down, so when I think about it I really have more free time even tho this will be 6 days a week...I'm not sleeping for hours after a treatment or all day between treatments.  Whooo hoooo.  May even try line dance classes that I have wanted to for years.   

[pelagia]

great to read how well it is going. 

[flip]

My nephrologist has refused to okay my solo act. What's my next step?

[G-Ma]

all those people you go camping with...take one of them a day to training...nxstage does not come out and check if you are alone, they just say you have to have someone with you...wink wink..you know.  Each person can train on diff things like my family did..none have been there all the time and I went alone a couple of times.  Also, NxStage will also help lean on the neph.  In my case they leaned on Davita which in turn is the neph since I had to switch Dr's.  In center Dr had said I could D alone but Davita neph said no....As far as they all are concerned I will never do my D without someone else in the house and yes, I feel safesty that way but if I go to ND for a few weeks I just have to train someone how to help me with is no problem..in my case, hold this ()*&*() vein and then run along.  My training was 8:30 to 2:30 the first 2 days and since that has been 8 am to 12:45 and I'm going home.

[flip]

All my contact has been with Davita because they have the only home hemo training center in this area. (they only have 2 patients on NxStage)