Extended NxStage setup and info

[tyefly]

I am going to be using the NxStage machine at home.... I want to do the extended time with a slow flow rate... I ask my insurance company when I went to dialysis options class and then told me that I can on use the NxStage machine for 2 to 2.5 hours 5 or 6 days a week.... I ask why I could not dialysis longer and they said the machine wont work any longer than that and that I will run out of distilate.... I think they use bags and not the flow system... Can I do longer treatments, can I hook bags together... are they going to restrict my amount of bag use.....Does anyone on here do extended using bags.... What about flow rates.... I want to go slow and be on the machine longer if I have to to be more gental on the body..... I am not on dialysis yet  but I am thinking that they really just want to hook me up and turn the machine up full blast and suck everything out of me......They told me that dialysising any longer than 2 hours 5 or 6 days a week would be a waste of time......why are they telling me that..... 

[willowtreewren]

They are telling you that because they simply don't know what they are talking about! 

Our machine came preset for a 200 flow rate and we start our sessions at that rate. I increase it to 400. If we left it at 200, we would simply be on the machine for longer. You are correct, that longer gentler treatments are better.

You can hang up to 30 liters of dialysate each time, but your neph will determine how much you need. It depends partly on you dry weight, and also on lab work that indicates how well your treatments are working. We started at 18 liters, but increased to 20 liters. They bags are 5 liters each, so anything except 5 liter increments is wasting dialysate anyway....

Our treatment time with 20 liters usually runs just over 3 hours. At a slower rate it would be longer. Some folks do nocturnal treatments with NxStage, but my husband is a restless sleeper and is not interested in that. With the nocturnal you need a heparin pump since the heparin bolus will run out if the treatment is too long. Then your blood could clot.

We really love our NxStage. It gives us lots of freedom.

Aleta

[Wallyz]

They're wrong. Call nxstage for information.  Do you have a kidney center chosen yet?

[tyefly]

I have kaiser insurance here in oregon....They told me that I will start at a place called DSI in Portland Oregon as that is the place where they will teach me to do it my self..... or at least train me to use the nxstage machine...... I would like to do noctunal  but I am not sure how much distilate that I would use for that method and dont know the speeds....they may not call it nocturnal they may call it extended.... but from what they did tell  me is the goal is to gain your speed on the machine and do it often but not a long time......anyway....there seem to be so many differences between what some out fits can do  and what they let you do...... 

[Meinuk]

tyefly, you are being given very bad information.  NxStage is a great way to do extended/nocturnal dialysis.  Nocturnal/Extended is the healthiest form of hemodialysis available.

There are many posts about the benefits of extended dialysis - low pump speed, better molecular clearance - the list goes on and on and on.  It is possible to hang 45L of dialysate for the NxStage machine.  There is some additional equipment: an external heparin pump and an additional stand for dialysate (if using the 5L bags) if you are using pureflow, the machine makes 60L at a time.

It sounds like the clinic you are dealing with had not been fully informed.  (that happens a lot)  Listen to the advice from the people on NxStage on this board, and read about nocturnal.

Here are two threads about Extended on NxStage  http://ihatedialysis.com/forum/index.php?topic=6234.0  & http://ihatedialysis.com/forum/index.php?topic=7725.0

And if you read Bill Peckham's Blog www.billpeckham.com, under the Extended/Nocturnal section you'll get a vast amount of technical/physiological information.

I am sure that others will opine - this is just a start.

When I was on NxStage, I did 2:45 20L T/W/R and 3:45 30L S/S - not exactly extended, but my weekends were high volume, and I felt so much better.

Centers may want to start you out on a standard 6x a week schedule, and as you settle in to your routine, you may be able to play with the times.

All the best,

Anna

[Wallyz]

Ignore Kaiser.  Call DSI and ask to talk to the home hemo dialysis nurses.  Make an appointment, and tell them That you want to do extended home hemo.  Listen to them carefully, and let them describe the program they have.

[tyefly]

Yes    I have always tried to egnore kaiser all my life.....    And I do already have a appointment to go to the center and see what information they can provide me..... That will be next week.... So I will certainly be asking about the training for the extended Nxstage home training....  and they will train me for that and that will be it....  they will probably help me get the correct supplies from my doctor and that will be that.......Yes  I am sure hoping that it goes that way.........thx

[Hemodoc]

It is not easy to ignore Kaiser and it is my goal and intent in this life to make my company that I worked for over 10 years as good as it can be.

I just started my NxStage training at Kaiser Sunset in LA.  In training I am using 20L but at home it will be 30L.  After one week at 20L I do believe that 30L will be fantastic for everyday use.  Soooooo much better than in center even at an excellent center with 7% mortality last year.

I will do a blood flow of 350 at home with FF of 35% with 30L.  From my calculations, that will take a little over 4 hours which will give me my 20 plus hours of dialysis per week.

NxStage is approved already for up to 4 hours per session, so you are not getting correct information.

My new neph advised me that we will have to watch my potassium closely which I already was prepared to do.  My average in center K is about 4.  On my second day on NxStage it was 3.5 before and 2.8 after.  I have enjoyed my first banana, my first orange and my first tomato in 3 years this week.  Thanks but no thanksfor the potassium pills.

Keep tuned to IHD and explore these issues for yourself, stand up and present the data and educate your trainers.  You will have to master the home dialysis issues to do so.  Be careful not to make issues on unimportant items and stick first with those that will make a difference.

So, do your homework and pick your battles carefully.

Good luck,

[willowtreewren]

My new neph advised me that we will have to watch my potassium closely which I already was prepared to do.

We actually had to make a 180 degree switch on potassium intake when my husband started on NxStage. He now eats lots of potatoes, a banana every day and usually cantaloupe plus other high potassium foods. Spinach on sandwiches instead of lettuce and spinach mixed with scrambled eggs about once a week. His labs are always great. He was drinking orange juice every day, too, but that pushed the potassium a little too high, just on the upper end of the acceptable range.

If nothing else, the dietary freedom (except phosphorus) is wonderful.

Aleta

[tyefly]

   I am really looking forward to that type of diet.... I love fruit   and  I am learning to eat veggies.....  I do eat veggie better now than when I was younger.....  never did like rabbit food alot.....I would rather have steak and potatoes.....   but for the past year or so  even meat was too exciting......  anyway..... I hate the whole dialysis thing  but   if its the only way to go I would rather do it at home...... My daughter who is 23 is going to be my partner untill  my hubby can leave work and start staying at home more and they he will be home to by my partner..... I am so glad that my daughter is able and willing to live with me and deal with all of this at such a young age....She works full time for the most part and goes to school at WSU full time....She is in her junior year....No boy friend now and really very responsible for her age...... she is scary at times..... when I was here age I have two kids and life was such hectic back them  with a dead beat hubby  which I divorced early on ......  I am glad she is thinking about her career first and all of the other stuff second..... She is a good kid....   anyway..... I am still hoping to get a kidney from hubby.......   I wont take one from my daughter..... she hasnt even grown up yet.........

[Wallyz]

Hang in there.  If you can do the extended therapy, (I do7 1/2 hrs night)  you can eat the phosphorus too. 

Keep in touch.

[willowtreewren]

Hang in there.  If you can do the extended therapy, (I do7 1/2 hrs night)  you can eat the phosphorus too.

Wallyz, did you have to get special permission to do the extended nocturnal treatments? I swear, nocturnal would make life so much easier! I've been following the discussion in the NxStage users forum about it with interest. Not sure my husband could handle it, but I find it very interesting because it HAS to be a healthier option. He doesn't like stuff on his skin ~ even prefers to get those bandages off before going to bed, but perhaps he could acclimate to the lines being taped at night.

How do you handle turning over in your sleep? And is your sleep of good quality?

Knowing he could eat ice cream might be enough to convince him to try. 

Aleta

[Wallyz]

My sleep is better than it was.  I can turn from my back to my right side(left radial fistula access).  You need a heparin pump and CAR 171 cartridges.  You need to talk to your center to see if they support it, and if they don't, offer to be a pilot patient, like me.

We now have three on extended therapy.  There is a mental barrier tosome people wanting to  do it overnight.  I have no idea why, or how to overcome it.  I heard about nocturnal and it was Polly shut the doors, that's all I wanted to do.

[tyefly]

 I am thinking that extended would be the way to go..... I am not worried about movement during my sleep....  I dont move much now which making the bed is great that way...just pull the covers up once...  I sleep with me two sib huskies now and they require more room than I.....    I know that when I start dialysis at home   I will have to sleep alone...  no dogs will be allowed.....  but thats ok....

[cherpep]

My center won't approve nocturnal NxStage while using needles - only if using cathetars will they support home hemo on NxStage.

[tyefly]

So can a person just use a catheder  and forget about the fistula......   everyone has said that a fistula last longer......   why wouldnt catheder not last......   

[funnygarcia]

Catheter is a potential entry of infection, I've heard that it also does not give you optimal dialysis compared to natural fistula use.

[cherpep]

Cathetars are definitely at more risk of infection.  I did have lesser clearance with a cathetar, but the extended time of nocturnal might balance that out. 

[Wallyz]

The fear of needles falling out of good buttonholes is unfounded.  I have not had one in a year of nxstage, 9 months nocturnal.

[tyefly]

Thx everyone....  I am did more blood work today and will be having a conference call with my doctor this thursday.....  I guess we will talk about  fistulas  ,  catheter  and why I became sick so fast ...   Maybe my blood work will show that I am getting better...... Its funny  I keep thinking that ....  I really have not accepted all of this and probably wont unitll I go on dialysis  and then   reality will set in...........

[M3Riddler]

Yes, you can perform extended treatments on NxStage. There are currently studies being performed on the longer dialysis. There are many people using Nxstage for Nocturnal Use. NxStage is unable to confirm this, because they have not yet been given approval to market the machine this way yet.
Check out www.nxstageusers.com/forum
There are some Threads posted there on Nocturnal with NxStage.

HH

[Bill Peckham]

Thx everyone....  I am did more blood work today and will be having a conference call with my doctor this thursday.....  I guess we will talk about  fistulas  ,  catheter  and why I became sick so fast ...   Maybe my blood work will show that I am getting better...... Its funny  I keep thinking that ....  I really have not accepted all of this and probably wont unitll I go on dialysis  and then   reality will set in...........

It took me many years to get my head around this, in 1990 I felt very alone ... just reading this thread I see so much great information from people all over the US. You are way way ahead of where I was ... keep going the way you're going and you are going to win.

Don't forget this is a journey sometimes it feels like two steps forward and one step back. Keep asking questions and mining the collective knowledge of IHD.

[M3Riddler]

Kaiser Ins cannot tell you how long or how much dialysate you can use. It is up to your condition and what you and your Nephrologists decide what is best for you. They will be getting paid regardless of how long you are on or how much dialysate you use.  They also cannot tell you which type of machine you can use.
Im willing ot bet you spoke with someone  who doesnt even know what dialysis is and they are going to tell you what your treatment is going to be like. You were probably speaking to someone who was reading something from a book that hasnt been updated in years....
Have your clinic or social worker speak the the ins company and set them strait. Its your life and if NxStage extends it, then by all means, go with NxStage.... Post more at www.nxstageusers.com/forum

HH
www.nxstageusers.com

[Bill Peckham]

Kaiser Ins cannot tell you how long or how much dialysate you can use. It is up to your condition and what you and your Nephrologists decide what is best for you. They will be getting paid regardless of how long you are on or how much dialysate you use.  They also cannot tell you which type of machine you can use.
Im willing ot bet you spoke with someone  who doesnt even know what dialysis is and they are going to tell you what your treatment is going to be like. You were probably speaking to someone who was reading something from a book that hasnt been updated in years....
Have your clinic or social worker speak the the ins company and set them strait. Its your life and if NxStage extends it, then by all means, go with NxStage.... Post more at www.nxstageusers.com/forum

HH
www.nxstageusers.com

This is incorrect.

Is there a reason you have not introduced yourself on the introductions thread "HomeDialysis"

[tyefly]

  I must work with my health care team  and my insurance company.  I have had Kaiser most of my life and even though it is a big HMO I have found that working with them is in my best interest rather than going in with a big demanding attitude.   I would like to see more improvements in dialysis care in general.  I am not on dialysis yet but will be soon unless I do go the transplant route.  I have learned so much here along with a few other website.  The webinars with touch cannulation were very informative.  Right now I am offered several options such as incenter nocturnal and the nxstage at home.  I feel lucky that I have choices.  MY goal is to go the nxstage home hemo and work with my health care team at Kaiser to dialysis as slow and as long as they will allow..... In time I am planning on continuing to work with them and hopefully go nocturnal.  or extended...     Its all about presentation......