So, NxStage it is for us!.......now what?

[alewis328]

Hello all,
My boyfriend and I have decided to give NxStage a whirl.  Anything has got be better than how he has been feeling. Seriously. Anyway, I have been to one morning setup with him at the clinic. This week we have a meeting about NxStage and getting the ball rolling. I really prefer to go into things as informed as possible. Anyone have any thoughts as to questions I should ask or really just anything? I want to go into this with my eyes as open as possible. thanks for any comments. I truly appreciate it.

[Dannyboy]

I am switching over to NxStage for basically the same reasons:  I want to feel better, and be more flexible with when my treatments are done.


As far as questions go, the one thing that comes to mind first off is more of a "preparation" question, am I right that you two have figured out a place at your home for the machine, and the supplies required, and have decided one way or the other about using the Pureflow section?


As far as the treatment side of things, it is a "given" that from everything I've read both here on IHD and elsewhere, it is superior to 3 X a week in-center for a number of reasons. 


No doubt the experienced NxStage folks here will chime in.


---Dan

[Bill Peckham]

I think expectations should be discussed early on because people can have different ideas about everyone's role.

In my perfect world your boyfriend would take the lead in managing his treatments, with you there to help - able to do any role (can you, will you learn to put in his needles?) but without a "I always do X" role. There are examples on IHD of a lot of other partnership models that work well, but the dialyzor taking full responsibility is my ideal.

So first I think you and he should have a vision of how this will work and then I would hope that the unit will support that choice. The number one predictor of Home HemoDialysis success is a desire to do HHD on the part of the dialyzed so you and Dannyboy are both set up to succeed.

[The Noob]

don't you all think, if the dialysor is feeling better, they will likewise do more for themselves? i am in agreement with all everyone has said. it has to be better than in center! i'm going to sit in hemo unit tomorrow and watch if they let me. and get the ball rolling. lets all share our newbie stories, that should help too! 

ps; DH only had 1.5 taken off friday, to reach dry wgt, and what a difference. napped the first day, but yesterday and today working up a strom. there has to be something to this.

[lmunchkin]

Alewis, there is really not much we can tell you other than be ready to be "overwhelmed". If you are commited to doing this for Bf, than great, go for it! But like Bill said, he needs to do the majority of it with you there as back up.  The more he does for himself will be a big boost to his morale. He needs to be responsible for a good majority of it, because what if something happens to you!

It will not be easy at first, but if you both are committed to doing it a home then you will have to "stick with it" and will find it very well worth the effort!

Danny, do you have a partner that is with you?  It is good that you are willing to do this but places do require a backup in case!  So proud of you guys for wanting the best dialysis for yourself/loved ones!       

Keep us posted and there are a bunch of us here to help you along the way!  Good luck!

lmunchkin   

[MooseMom]

I agree with everyone else when they tell you to have a conversation with your bf to make sure that you will be his backup, not his caregiver and nurse.  You should both be very aware of your own and your partner's expectations.  I know, though, that it is hard to define your expectations at this early stage when you don't quite know yet what is involved, but I think it will quickly become clear as you begin training.  You will be able to ascertain his willingness (or not) to do it himself. 

I wish you both luck.  I am always very proud of anyone who sticks by their partner who has ESRD.  It's a dreadful, lonely illness. 

[lmunchkin]

Just to add to Danny's point about PureFlow!  They want every NxStage user to do the PureFlow..It is nothing more than a cabinet with a huge bucket in it to place a long slender SAK in.  Then you turn your water on and it makes a 3 day batch in about 7:30 hrs.  The pre-mixed bags are for basically traveling or any kind of emergency back up if something goe wrong with your PureFlow system.  Your Dialysis Cycler is totally separate from the PureFlow system (which contains your dialysate).

When you have problems with the CU in the PureFlow Cabinet, then they allow you to dialysis with Hanging bags.  It is always a safe bet to have a few days of Hanging bags around.  But if the Cycler machine that does actual dialysis goes bad, then you have a problem.  But I had a malfunction on my cycler one time, and NxStage overnited me another one.  Tech support is second to none.  I relied heavily on them when I first started along with training nurse. I know they thought I was paranoid as hell, cause I bugged the daylights out of them! Seriously!!!

But I personally, do not like hanging bags over my head, so am thrilled with the PureFlow addition to NxStage.  It is much eaiser to run a tube up to meet the tube in the cartilege, than hanging bags up.  I will use those bags when traveling only!  Oh another thing, they will cost alot more to use those bags than the PureFlow system.

Danny, you are the right fit for NxStage.  You will do well with it!   

lmunchkin

 

[Dannyboy]

Yeah, I have a partner for NxStage....my dear wife.   


I'm excited to do home HD, and so is she.  We will be using the Pureflow, too.
I know it will be better for me, in many different ways.
---Dan

[lmunchkin]

The only draw bac to PF system is all the samples you have to send off for analysis.  But, you dont have to do that as often. And you do want analysis done on your water and dialysate, just to be safe! 

Other than that, it is a great addition to nxstage!

lmunch

[The Noob]

hey yall, just got home and can grab a breath after the normal unload and so on. got some good news from home hemo nurse.
as soon as DH fitula is initiated for buttonholes, we can start. possibly within 2 weeks. we will have to drive to toledo for 2 weeks, maybe less if we can master it. we will use his lazyboy with a plastic cloth and sheet over that.
they insist on 5-6 day runs a week of hemo, we will opt for 5 so not to get too overwhelmed.
we will be using the bags because they say its easier, even the labor intensive bags. we will check into the permaflow as we go along.
they will let us get to training at 10 am due to our distance. he will go there rather than clinic and got his treatments there.
she explained alot on the phone and i felt pumped and encouraged. he will do most of it, i will help with vitals checks and so on. he will learn to self cannulate. we are both quite versed in IVs, pumps, meds so we have that on our side.
we will have to get a small addendum on our home insurance but it is less than 30$ a year. (I checked.).
she says the machine uses about about the same power as a toaster.
we spoke with head nurse at clinic and SW. both already approved us for this.

the only concern i have is who they use for those deliveries. UPS out here is sketchy and sloppy.
who picks up the bloods? and do they need to be refidgerated prior? she says they give us pre-printed box/label to ship out and its my understand this is done twice a month?
also, there are only 2 supply companies to deal with. we can get supplies monthly or bi-monthly.

again, i hope this is all accurate? we are both feeling alot of relief and excitement. we will have to meet with her one day a month in toledo, and one day a month at the clinic to see doc.
we will do this until a transplant, at this point.
i am so happy we moved here. much extra money, much more space. (all wood floors. only carpet is under 2 futons in living room area).

she says we may be able to get around the 3 week training, we both agreed we won't take any shortcuts as we want to be very comfortable when we are on our own.

ok, any news from anyone else?

[Bill Peckham]

hey yall, just got home and can grab a breath after the normal unload and so on. got some good news from home hemo nurse.
as soon as DH fitula is initiated for buttonholes, we can start. possibly within 2 weeks. we will have to drive to toledo for 2 weeks, maybe less if we can master it. we will use his lazyboy with a plastic cloth and sheet over that.
they insist on 5-6 day runs a week of hemo, we will opt for 5 so not to get too overwhelmed.
we will be using the bags because they say its easier, even the labor intensive bags. we will check into the permaflow as we go along.
they will let us get to training at 10 am due to our distance. he will go there rather than clinic and got his treatments there.
she explained alot on the phone and i felt pumped and encouraged. he will do most of it, i will help with vitals checks and so on. he will learn to self cannulate. we are both quite versed in IVs, pumps, meds so we have that on our side.
we will have to get a small addendum on our home insurance but it is less than 30$ a year. (I checked.).
she says the machine uses about about the same power as a toaster.
we spoke with head nurse at clinic and SW. both already approved us for this.

the only concern i have is who they use for those deliveries. UPS out here is sketchy and sloppy.
who picks up the bloods? and do they need to be refidgerated prior? she says they give us pre-printed box/label to ship out and its my understand this is done twice a month?
also, there are only 2 supply companies to deal with. we can get supplies monthly or bi-monthly.

again, i hope this is all accurate? we are both feeling alot of relief and excitement. we will have to meet with her one day a month in toledo, and one day a month at the clinic to see doc.
we will do this until a transplant, at this point.
i am so happy we moved here. much extra money, much more space. (all wood floors. only carpet is under 2 futons in living room area).

she says we may be able to get around the 3 week training, we both agreed we won't take any shortcuts as we want to be very comfortable when we are on our own.

ok, any news from anyone else?

It sounds like they are setting you up to mail your blood samples. Some people have little refrigerators to hold their pre draw, I don't so it is at room temperature all night until I do the post draw. I drop off my samples at an NKC center I live near, I think to mail you pour off the plasma into another vial after you spin the sample but it shouldn't be too much.

Delivery issues can be an issue - I'll have to look for Meinuk's account of her trials. If it is the same person each time I think you're in luck ... in my experience it's when a different person shows up each time in progressively sketchier transportation that it is time to be concerned.

[lmunchkin]

I do his treatments in evening around 5 pm.  So when I do his draws, I put them in refrigerator over nite.  Then Fed-X picks up next day.  They gave us boxes, Ice packs and printed labels to send it all in.  Your samples must be cold, but not frozen.  Those ice packs are wonderful and will keep samples cold.  One day, it was probably 90 degrees outside, and my sample (with ice pack) had sat out in sun that whole day till I got home about 3:30 pm.  I picked it up, and it was still cold. I always put 2 ice packs in my box just to be sure!

So glad to hear you are going to do it at home.  Nxstage (I assume that's what you are going to do) should do very well till transplant.  Good Luck you two!  Im anxious to hear of your experiences!

lmunch   

[The Noob]

question:

today while at clinic, nurse tells me we will do pureflow, i said no, we will be using bags because of our well water and we won't be doing this long term. plus the HH nurse already stated thus.
the clinic nurse says: "well we want you to use pureflow because its more economical."
i said: "our HH nurse says the insurance pays for it all, only out of pocket is maybe little extra on light bill, trash pick up if you use it, and any personal items not supplied you might want yourself".

so which is the case?

[Dannyboy]

Using the Pureflow machine saves a large amount of prepared Dialysate having to be periodically shipped to you (depending on your prescription, could be as much as 30 liters of Dialysate per treatment...5 treatments a week X 30=150 liters or about 40 gallons per week...if you get shipments twice a month, that's about 280 gallons at a time).



On the other hand, the water and electrical consumption of the Pureflow is minimal.    Other issue with Pureflow is having a water source and a place for it to drain, not usually a big deal IMHO.   Of course, if your water source is not up to par, that is different.   Being on well water does not automatically mean  you have bad water.   They will give you a test bottle to take a sample to see how the water is.    (perhaps you've already done that).


---Dan

[The Noob]

hey thanks, well if we were going to do this long term, i'd say yes to permaflow. but its alot to learn and do so thought we'd wait and see how quickly we digest it. since we will only do this till transplant, i'm hoping it will be do-able.
i was thinking about the PD supplies. for manual we had 37 days worth. this was about 36 boxes in the LR. (fluid).
when he was on the cycler briefly, it wasn't as much, about 20 boxes i think? plus the cartridges, etc. but the bags were bigger.

40 gallons a week, wow..we have a small bathroom, very small. with just the one well line coming in. no softner on it. guess we'll have to see what they say at training.

now, what have you found out about the insurance? he has been on dialysis 21 months, so BCBS is primary and medicare secondary. this changes if he is on to the 30th month, they flip. actually at that point we'd have to get our own policy to add as the primary will end then. 

[lmunchkin]

Noob, on the insurance part, when my hubby worked he had ins. thru the co he worked for.  They were primary and M'care was second.  It is true after 30 mths, they flip.  But when he had to stop working in Jan. of this year, he kept his insurance (Cobra) and M'care is still Prim. and BCBS secondary.  We are paying alot of money out for the Cobra and Im not real sure how long it will last!

Now as far as PureFlow and well water, surely they are equipt to handle that.  There was another lady and her husband that trained when we did, and she goes through more Paks (I know you are not familar yet, but you will be soon) than we do.  A Pak lasts us about 3 months, but I think hers is about 2 1/2 months.  The Pak is a huge insert placed on the side of Pureflow cabinet.  We opened one up after it was no good anymore, and it has  4-5 filtering system in it.  It will do the purification of your water, (I beleive that it does, but not certained) so that you can use it and feel confident that your water is safe.  Those giant water filters are there to take out all impurities in your water.   So that is not a problem.

I know you think that this is too much, but Noob, you can do this!  Just try it!  You will get it eventually!  Treat it as a new job, with lots to do & learn.  After doing it over & over, it will become easier, trust me!  I thought I was going to pull my hair out and was so frustrated and wanted to send him back to Incenter, but Im so glad I didnt!  The results have been amazing!  It took about a little over a month after going home, that it all sunk in! Things started to click, and for this gal, that is pretty darn good!  I can honestly say (he can't get transplant) this is the best dialysis modality, (exception would be nocturnal) cause we can do it as long as we like and gentle as we like.

The pureflow also helps with so much to have to stock and store.  You will be shipped some boxes with the (Concentrate Saks) 2 to a box.  Each sak (depending on you prescription) contains 3 days worth of dialysate when water is mixed with it.  Mine makes 60L of dialysate at 20L a session, is 3 days! Hanging bags are premixed, and I argued for using them at first, but once you get use to the Pureflow system, it is a God send.  I thought I would never get it down, but once I did it, it was so much easier to use!  Not to mention, using very little storage and tearing down all those boxes!

Look, I won't lie, it will be "overwhelming" at first, but you can ask others like Looney, Boswife ect......if they arent reaping rewards with it.  I think Looney hubby is having access problems, but that is no reflection on NxStage.  Boswife, I can bet will definately agree with me on this and there are others out there too.  Noob, stick with it girl.  You will be glad that you did!   And you will look back and be Proud of yourself and your efforts!

Hang in there and please, let us know if we can help!  You are asking questions and that is great!  Tells me you are a fighter going through the rounds!      

lmunchkin 

 

[tyefly]

I used all bags.... even though I had the pureflow box..... I did use it for about month....  its is easier and less supplies......  but since I like to go places   I wanted to have bags on hand all the time and that way I dont have to plan to go .... I just go... dont have to worry about supplies....  pure flow isnt hard to learn.... just another thing to learn.... My center said that it saves THEM money if you use pureflow....  They said that they allowed a certain amount of bags per person in case the pureflow system didnt work you could use bags instead..... since most of the other people who were using Nxstage didnt every go anywhere I used there allowances... do thats is why I used bags.... I am not interested in saving the clinic money....  they make enough....off of each of us... I am interested in what makes my life easier and since I go to like my beach house almost every week end or camping or where ever  I did not want to constantly see if I had enough bags  to go....My clinic was good about letting me use bags....   Well water may have too many minerals...or other things in the water.... you will have to have it checked.....  if you want to use bags just tell them that you go places.... alot of places.....

[lmunchkin]

That may work, Noob!  Good Idea!  We don't travel much so we just us the pureflow!   Good luck, Noob, and you can do this.

lmunchkin

[The Noob]

thank you! i hope i'm asking good question for the OP, since i have hijacked her thread..i am sorry, didn't mean to!

well we don't think we'll be doing this very long. maybe a month or 3 before transplant since he has a living donor, and i don't want to get burnt out, went through that once and it was awful.

we only have one line coming in and the horse hose is hooked to that (water) as we use a rainwater system. i was reading posts from the man here who has the sig under his line "off grid NM"..though we aren't fully off grid, much of what we do is.
i've been pouring over all the posts on the nxstage board here and quizzing DH, he can answer everything i put to him! i am really excited about this, i love learning and the challenge and most of all i am sick and tired of him sleeping night and day and feeling like carp all the time. i want him to feel a little more normal again.

he had BCBS with his company. after 12 months they fired him, said they don't accommodate disabled workers??? it was a hard blow after 26 yrs there. just a mean note in the mail.
well the NKF pays his cobra until next august, we will have to get a add on policy then.

i found the answer about the insurance paying for the HH. they do. nothing out of pocket for us. not at this point anyway.

they do say they don't give us a chair though, but many here say they are supposed to?

the hardest part of this training is to get it done before heavy winter starts, my son will manage the homestead and wood stove while we're away. the gas is going to be the kicker driving back and forth! ouch!

 

[lmunchkin]

You are doing fine, Noob.  You got your ducks in a row and have it all mapped out!  Im hoping his transplant comes through too!  But we all know about MURPHYS LAW.  At least by learning this, (and not to be alarming) so if after transplant, and God forbid, it fails, you will have NxStage to fall back on!  Just saying!  But Im more optomistic about things and really pray things go well for you both!

Let us know of your day to day training.  It is so challenging, but I love a challenge!

lmunchkin   

[Meinuk]

It sounds like you have a plan.  I used Pureflow exclusively for a long time, because I had a small apartment and the monthly deliveries of the bags were killing me.  (pics in the "NxStage Training Starts"  thread)  http://ihatedialysis.com/forum/index.php?topic=5229.0

RE: supply delivery.  That was the worst part of me being on NxStage.  Every once in a while, I would have a driver that simply did not want to deliver my supplies, or would get his times off or would deliver everything to my neighbor and expect me to carry a month's worth of supplies on my own to my apartment.  This is when I let my annoyance be heard. I believe that NxStage has made this process better, (at least I hope they have). There were also some times when my customer service rep would send me the wrong order dates, and then make up delivery inventories on her own.  (this is how I ended up with a years supply of drain lines one month). I think that the failing economy has made them more efficient with supplies.

The upshot is that you know I had to be feeling great on NxStage, because the worst part of the experience had nothing to do with my physical health. It was worth it, and I would do it again in a heartbeat. 

RE: my temper.  Just so you know, my yelling was my baseline temper.  People who thought that I was angry because I was that "poor woman on dialysis" really didn't know me at all. I have a 15 year old reading this over my shoulder as I type this.  She looked at the emoticons and pointed to this  and said (without reading any of this) "I'm guessing this is your favorite."  So you know, my anger had nothing to do with dialysis, and everything to do with me being annoyed at ineptitude. I don't yell very often, but when I do, it is usually memorable. Somewhere buried here on IHD is a post that had to be edited because NxStage called my nurse to complain about it.  (I am proud of that one.  Maybe it made them up their game just a bit)


RE: Bloodwork, I drew and spun my monthly blood draws while I was on the machine and then just dropped them into a box next to my chair that I chilled with ice packs. (I picked up empty tubes at my clinic visits) At the end of the run, I did my post draw, and the next morning I walked them to my clinic on my way to work the next day (ahh the joy of living in NYC).  BUT there were times that I sent them via fed ex (after my clinic was closed by the state of NY).  I never had a problem with my blood work.  I also drew and mailed monthly (regular mail) my tissue typing samples for the list.  They were never refrigerated at all.

One of the big adjustments for me post transplant was that I was no longer allowed to draw my own bloods.  I hate wasting time, and waiting in the lab drives me crazy for something that I know I can do myself, and be better and more efficient at.  I gave up that battle pretty quickly though.  Now I just try to get to the lab when it is empty. On the plus side, I was allowed to draw my own bloods the days after I had my transplant and I was still in the hospital, that made it easier because there were so many needles....

[The Noob]

hey thanks! so its a lab draw once a month. thats good to hear.

if its UPS doing anything, they pretty much open the door and throw it out. fresenius and baxter were awesome. brought it in, chatted, did whatever was needed. even Fedex was ok.

i realize i may at times sound on here like i'm a bundle of nerves. i apologize for that. i am actually a very calm strong hard working person. i think it will be fine. we're going to watch the nxstage step by step video tonight.

i've been up since 3 am. got alot done. son just left for his tutor and backed my van into the ditch. DH went and pulled him out with truck. i have to sit here and chill a bit, long day already. we're trying to get it all moved and finished and updated here and i'm worn out. but want it all done before we start training and winter hits.

[Meinuk]

i realize i may at times sound on here like i'm a bundle of nerves.

Noob, we have all been a bundle of nerves at one time or another.  I can't tell you how many times I watched Bill Peckham's Cannulation video
before I finally stuck myself for the first time. (maybe 50 - 100? it got so bad that I could hear his voice when I was prepping my arm at the center)

http://www.billpeckham.com/from_the_sharp_end_of_the/2007/12/cannulation-vid.html

But you know what, it got me through training along with posts and PM's from Susie, Sluff, Paris, JBeany, Silverhead, Black and everyone else sharing support, tips and tricks. I did it all alone, I only had IHD for support, and you know what, I realize now that it was all I needed.

With IHD, I feel as though it is a team effort.  (and Karol is our head cheerleader!)

Go ahead an be nervous, but know that we have your back.   

[The Noob]

  thank you..
the thing we have going for us is many years of EMS experience, drugs, IV's, anatomy/physiology, meds, etc.
DH was a special IV team for difficult IV's. i've seen him put an IV in faster than a jack rabbit on a date (to quote a movie line). i am also an STNA and he worked for a few years in an ER as a medic, plus he has 26 years as a senior A list paramedic, MICU/NICU, you name it he did it and was one of the best. if he can't cannulate himself, we're in trouble..LOL

i am thinking that part of it shouldn't be too hard. (hopefully). but i am thinking the driving is gonna be rough. 1.5 hrs a way in good weather, and back again. then getting it done before we leave and when we get back. he is putting a warmth cushion in the car for me for the seat. we'll get through it.
you know, i am curious as to how he will start feeling during training as he will be getting short daily treatments while we go through it. i am betting he will be shocked..LOL..

 i have an area all cleared for his treatment site. as Bill says, its about the space of a face cord of wood(1/4 cord), a little bigger. with shelves, near bathroom and outlet. we have a lazy boy and end table. at least its a good start.
i'll have to post a pick when we start. we both need a whole weekend to veg out before we get on the training cycle.  wheres that icon for a coffee? 

[Meinuk]

Noob, I may be misunderstanding what you wrote, but he will be doing his dialysis while he is training.  Each training session is a dialysis session on the new machine.

then getting it done before we leave and when we get back.

Getting what done?

As far as supplies go, I've lugged and stacked a lot of wood in my day (I wasn't always a city girl) and those supplies always seemed bigger than a face cord of wood.  But then again, I was living in a small apartment.

I was feeling so much better by then end of my first week of training that I could deal with an early morning ceiling collapse that Friday without blinking an eye.

It sounds like you both are all set.  Good luck with your training, and please keep us posted.