nxstage short daily or incenter nocturnal

[tyefly]

Hello to all...   I am trying to make a decision on incenter nocturnal verses home short daily with nxstage.... My insurance (kaiser) does not allow nocturnal nxstage use or extended ... they only offer short daily at about 2.5 hourse per day.... That is what I was told when visiting the nxstage training center.  They told me that if I wanted to do nocturnal then I would have to go in center three days a week.... I am not on dialysis yet but I will be in a few months..... waiting for my fistula to mature (just got it last week).  I like the idea of doing a dialysis treatment that will be the best for my body.  I am thinking that slow speeds with my new fistula would be great.....  I think they said with the short daily they run speeds of 450.... I want my fistula to last and I want to feel good.... The feel good is the goal.. I am going to have to start with either incenter nocturnal or use the nexstage and would like some input from some of you.

[jbeany]

Wow, tough choice!  Both options are some of the best treatments available.  So here's my 2 cents worth - I've never done noctunal, but I can ask a few things that might help you decide.

nxStage usually needs a partner.  Doing it at home would take up partner's time as well as yours.  Would that be an issue for you?
nxstage is more flexible, though.  You can rearrange days and times whenever you want.  You can travel with it without doing any of the paperwork and scheduling needed to travel with in-center.  Is being able to travel or have a flexible schedule important for your work or your family obligations?
nxStage takes up a lot of space at home, and takes a lot of time and energy to keep up with supplies and blood work and machine upgrades, etc.  Do you have the space to store the supplies and the space to put the equipment in, preferably away from any pets?
Your food and fluid restrictions are minimal on NxStage because you get treatment so frequently.  Incenter, even nocturnal, still has the long weekend off.  You haven't started yet, so there's probably no way for you to know how bad you are going to be with fluid restrictions, but you should have some idea of how much self-control you have in terms of dieting. Is self-control a weak point for you?  If so, Nxstage's lighter restrictions might be better for you.

In-center nocturnal involves sleeping at the center.  Are you a light sleeper?  So you thrash about a lot?  Would being away overnight be a problem because of pets, kids, etc?  Would there be someone at home who would miss you?  I, for one, can't sleep for beans away from my own bed, my feather pillows and my white noise machine.

I've done nxstage and standard in-center.  Both have advantages - no muss and fuss at home if you go incenter, for one.  No need to worry about a partner's schedule, too.  None of the centers are close to my house, though, and not driving during the bad winter weather was a tremendous bonus for me.

Just some pro's and con's to think about!

[Hemodoc]

This is no contest in my opinion.  I just started on the NxStage in early June and now home for one month.  I hope to never go back to the in center routine ever again.  There is no comparison.

jbeany is correct that there is a greater time commitment than with in center for you and your partner.  I am likewise with Kaiser.  The 2.5 hour short daily dialysis is standard.  However, if you are in southern California, you need to know that Kaiser has several outside units contracted for NxStage and they were uniformly more receptive to a higher dosage.  The NxStage System One is approved by the FDA for up to 4 hour treatments and that is what I am doing with 30L where 20L was the recommended dosage.

I must admit that I was taken back by both of the nephrologists that saw me when they said that I could have the 30L dosage but it wouldn't make any difference.  I held my tongue.   I have my first follow up visit tomorrow after finishing my training a month ago. At the center, my PO4 (phosphorus) was 4.3 and my crt after a week and a half of daily dialysis was 3.9.  My labs late last week on the 30L/4 hour sessions was PO4 2.3 !! and that was one hour after eating a 10 inch pizza covered with cheese and tomatos.  So much for languishing on dialysis.  My crt went down to 2.1 on the higher dose of dialysis.  My concern in choosing the NxStage had always been the reports that the PO4 went up as well as phosphorus binder use.  This is an indicator of middle molecule clearance.

Well, now with my latest labs, I am absolutely sold on this little machine.  It has some things that all should take note of, but I believe that I can compensate for all of them.  With 30L, I am getting the type of labs usually associated only with nocturnal dialysis.  I must confess that my 4 hour regimens are longer than most tolerate during the day, but it is working well with both my wife and I.  Technically, they still fall within the definition of short daily dialysis. 

Now the last issue is learning how to self cannulate.  You need to start looking at the protocols for touch cannulation on Home Dialysis Central.  If you have trouble finding that link, I can look it up for you later.  I had an incredible tech who also happended to be my patient before I became her patient that taught me many wonderful tips on dialysis that I use today at home. In some ways, it may be best to learn your cannulation technique in center, but there are many that do it denovo in NxStage training.  I would have found that a very difficult process to learn both at the same time.

I find the bags much easier than the Pureflow, so that is what I use.

Bottom line, NxStage is FDA approved for 4 hours and that is what I do.

Keep learning, you are doing great.

Peter 

[tyefly]

Thx Jbeany for all the input on what to think about…  I am a light sleeper.. I do have  a partner both my daughter who stays with us and is finishing up on her Business degree and of course my wonderful hubby… They are both very interested in learning as I am with putting the best program together for me.. I do like to travel and would like to go in our motor home from time to time..  Back packing I think is a thing of the past  unless it over night….. but that’s ok…. I am getting use to the RV life style… We have our own business so we are both very flexible.  I do like the idea of the nxstage flexibility and that was my first preference. I was disappointed with the short term daily and worried about the speeds that I would need to do for that amount of time…

Peter do you do 4 hours daily…six times a week or five   what are your speeds…. I am thinking that I should go ahead and do the nxstage system and work on trying to get a longer run time…. How do we figure out how much distillate to use and at what speed…. Is there a formula for that ….  You are using 30 L  so what speed are you running…  is there somewhere where I can get more information on that ….. There is so much to learn … arterial pressures, and venous pressure…..where do I learn about that …. Blood pressure during run time…. Is there parameters, is there a way to control that…..    I guess I worry about just being told that this is the way you are going to do and that is the way everyone else does it…..  I am going to start studying about self cannulation  and have seen a few topics on touch cannulation .   Crazy all the things I need to learn…but I do like to learn…   I might learn it all and then have that transplant before I even start….  I am in the approval stage and have done most of the test except the tissue match stuff… I have several life donors who have offered….. But they still need to be tested….. You all are so informed and I really appreciate all the information that I get here…. 

[Hemodoc]

I do 4 hours 5 times a week taking Wed and Sunday off for my wife's sanity.  It is a lot of work, but I do feel better and can eat whatever I want as long as I am actually on dialysis.  Mounds of spaghetti, pizza, enchaladas, tacos with salsa, cheese and sour cream just to mention some of the languishing I have been doing the last month.

I run at a blood pump speed of 370 with a Filtration Fraction (how fast the dialysate flows past the blood) of 35% which is 130 ml/min.  My arterial pressure is 135-145 and my venous is 145-155 which is excellent.  The arterial is the tube taking the blood out of the arm and the venous line puts it back in the arm higher up the fistula.

NxStage has a chart based on weight but it is my opinion that it is fundamentally too low for their short daily dialysis recommendatons.  That is why I went with the usual 20L during training and insisted on increasing that to 30L which is the max I can do on the 170-B cartridge.  Thus, I have maxed out my dialysate on the current set up.  That was the way I chose that number.

Once again, you really should go and check out the Kidney School that Dori Schattel has put together.  I think you will answer many of the questions that you haven't even thought of yet.

http://www.kidneyschool.org/

Keep learning, it is in your best interest to known and understand the choices that you will be soon making one way or the other.  Renal disease does not take holidays.

[jbeany]

I ran at 450 pump speed.  I do that in-center as well. I've actually had fewer problems with my graft since I started running at the higher speed. (Don't ask, I don't know why either!)
  I did 5 days a week, and my average run was about 2 hours and 15 minutes.  I varied my treatment dose.  I was using the pureflow, which comes in 60 L packs.  For 3 days, I did 20 L each treatment, then I took a day off.  For the next two days, I did 25 L each treatment.  That did increase my treatment time about 20 minutes or so, but kept my labs good enough that I didn't need to do 6 days a week.  I also didn't like dumping 20 L of pureflow fluid every time when I did the 2 day part of my week, so using the extra 5 each time made me happier.  (There is nothing about dialysis that is environmentally friendly, I'm afraid!)  NxStage tends to start everyone on 20 L, 6 days a week.  Don't let them tell you that's the only option!

[Meinuk]

I loved my NxStage.  I was on it for a year, and I did a hybrid of 20L runs T/W/TH and 30L S/S.  I had Monday and Friday's off, and I felt great.

The machine is set up t do the math for you.  Your clinic will help you decide your FF It is possible to change the settings - but I never did)

I also ran both Pureflow and Bags  - I preferred the Pureflow (because I have a small apartment and the bags take up a lot of space)  But I did have some difficulties with the pureflow (I posted a lot of my experiences with NxStage in this thread)

There are people who use the NxStage set up as a Nocturnal machine - there are a few modifications, but it serves them very well.  (you'd do well to read anything Bill Peckham has posted about it)

There are plent of people here on IHD who have do In Center nocturnal too (see ReRun's posts and KitKatz as well)

IHD really made it possible for me to do NxStage, and the people here are amazing support for whichever modality you choose.

Peter is right though - Kidney School has resources that can help you demystify dialysis.  Once you get familiar with everything, it is less scary and far less intimidating, and then you can concentrate on keeping yourself as healthy as possible.

Good luck with whichever you choose, and remember - here on IHD, support is just a keystroke away.

Best,

Anna Bennett

[petey]

Marvin never tried in-center nocturnal, so I can't speak for that.  Last week was his two-year mark with NxStage (home hemo).  We love it, love it, love it.  We use PureFlow (most of the time -- though we do use bags on occasion).

[tyefly]

   Thx to everyone... for their input....   I am going to do nxstage at home even if its short daily and try to talk my doctor into giving me the longest run possilble untill a nocturnal program is availible at home  with my insurance.....  I still have alot to learn ....   and a ways to go....  My GFR is now down to 14 so the time is closer.... I still need more time for my fistula to mature....  But the thrill is on.... and summer is still here  even though it was way too hot today in the valley ...(Portland Oregon )   for the last two days its been around 106  which has broken all records....   But I am sitting here at the Oregon Coast  enjoying the 60 degree weather....  sometimes I wish it was just a little warmer here..... at times....  but not today....
    thx again  for all the information....  IHD  is the best

[M3Riddler]

I would start NxStage Short Daily at home. You do not want to be bound to the centers hours and schedule. As long as you have someone with you to be your caregiver, go with NxStage.
As far as the Ins telling you that you cant have nocturnal at home, I would ask someone else. You and your Nephrologist should be able to make that decision and not the ins company. They are getting paid the same regardless.
There are many on NxStage who do nocturnal and im sure a few have the same ins you do. Fight it and go with NxStage.  Find out more at www.nxstageusers.com/forum

HH