FINALLY We Started NxStage Training !!

[boswife]

oh boy amanda,,, i wish we coud have trained at home!!  the transistion was very hard for me   Might i ask what you got for your chair???

[amanda100wilson]

http://www.championchair.com/?t=special&productid=17.

Link to the chair that I bought.  It is a clinical chair, as I wasn't to bothered about it's appearance in my home as it's out of the way in our bedroom.  Does Trendelenburg and I actally find it very comfortable.  I got a navy one.

[Lindia]

oh boy amanda,,, i wish we coud have trained at home!!  the transistion was very hard for me   Might i ask what you got for your chair???

I'm envious of people that trained at home also ---  Maybe 3 weeks at the center and a week at home - in my case, I think that would have been ideal , the transistion is HARD !

[lmunchkin]

I remember the frustrations I had when trained too. It wasn't easy for me either. Thanks for hanging in there Linda!

lmunchkin
 

[boswife]

Linda, i think i can clame the spot for the biggiest scardiecat...    I went from full on confident that we were 'going to do this' to a trembling fool for 5 months...lol  I 'got it' fine, but my nerves just wouldnt settle and that was the worst of it.  (let me tell you though as long as im claiming my fears, i have anxiety issues that kicked in full force and being a drug phob, i couldnt do much about it but 'shake' my way through it   )  It is such a great thing to see how wonderfuly put together it really is (now that i can see through the fog) and am so unbleaveably proud of us, and happy that we we're home.  Wouldnt give it up for anything (well, of course unless he had to for some other reasons)
also, (as i think i just saw you over there) I got emence help from  whats now "home dialysisors united"?  (geesh is that the name..lol,,just changed the name from  nxStage users) They were right there when i needed them.  Increadable bunch of people! And i second the Tech support!! AMAZING!!

[fearless]

I've been in-clinic for a few months and just got the OK to do home hemo training.  Does anybody know why my nurse would say I have to run at 350 to go on nxstage?  I'm doing 300 in the clinic. 
thanks!

[boswife]

Is it your 'in center' nurse? They dont really know/ understand NxStage.  She may be saying that to get the same amount of blood processed (or some other such thing ) you would have to run at a certain number..  I run Bo at 300 for four hours, and others run even slower and longer, and some faster and shorter etc.  It's all about YOU and how you handle this.  You'll LOVE NxStage.  Took a bit longer for me to 'LOVE' it, lol, but it is lovable

[fearless]

It was part of the call from the home therapies nurse.  I got the good news that I'm OK'd for home hemo, then I was told I need to get my BFR up to 350 (I've been doing 300 in the clinic with good results)  I said OK, because I'm not going to do ANYTHING to keep myself off home hemo.  But I know for a fact that you don't HAVE to run at 350 on nxstage.  So, I'll just talk to the doc about it.  I've learned not to get belligerent with the nurses because most of them are already on my side (and I love them for that).  I feel it's likely that this is just one more "policy" that the clinic has, probably something to do with keeping stats up or something. 

I think if I run for 2hrs and 20 minutes at 300, isn't that the same as running for 2hrs at 350?

If anybody know that that's how it works, please let me know!

Thanks!

[lmunchkin]

Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR.  I can run J at 300 to 400 if I want.  My norm for him is 350 to 380.  I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him.  If they tell you to go over 400BFR, then they are wrong, period.  They are thinking In-center and not NxStage.

Just take them up on their offer.  You are right in just listening and not creating flack.  Just learn all you can (It is very hard at first), then when you get home, you will learn alot by doing. Im not going to lie, you will be all nervous, and that is understandable!  But when those problems arise, rely on NxStage Tech support!  They are the best!!!

After you get use to it, you will begin to see, what you "toggle" in the variables, will begin to click.  You will see that certain things that you adjust will have different outcomes!  I know this is not making any sense right now, but it will!

Yea just comply right now and everything will fall in place!  So glad to hear you are going to try this, Fearless!  Kudo's to you!

God Bless,
lmunchkin
 

[lmunchkin]

I think if I run for 2hrs and 20 minutes at 300, isn't that the same as running for 2hrs at 350?

If anybody know that that's how it works, please let me know!

Thanks!
[/quote

It depends on certain factors. Yea, it seems the way you indicated, that that would be logical, but you have to figure certain variables in there.  It based on amt of fluid to be removed, how many liters required to remove the amount, what FF (flow fraction) is allowed....ect.  Like I said, there are alot of variables envolved here and you will be trained in those.

Fearless, there is no doubt, if you are commited, that you will do very well with this. You will see a big difference in health, heck, you will see or feel it when entering training and they start to D. you!

Good luck & please keep us posted!
lmunchin

[JohnJ]

Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR.  I can run J at 300 to 400 if I want.  My norm for him is 350 to 380.  I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him.  If they tell you to go over 400BFR, then they are wrong, period.  They are thinking In-center and not NxStage.

No, you're wrong. I run at 450 at home with no problem. Those were the instructions from my clinic.

[tyefly]

I always found higher speeds did not help......  My pressures would be too high for me to do anything....like work on projects , do computer work , beading , tying flies..... all that stuff when your sitting there..... so I lowered my blood flow speed so that my pressures would stay with in the limits so that I could get up and move around and do projects......  so I would have to stay on the machine a while longer but I was ok with that.....anyway....slower dialysis is better  and  way much better on your veins......  after two years of doing home hemo most doctors cant believe that I even have a fistula.......  WE just need to do what is best for us......  my clinic at first wanted me to run fast and I was told to not move my harm at all for the three hours I was on the machine.....   well  since they were new to Nxstage.....  back then   they didnt know.....  now they run everyone at a slower speed...... its all about keeping the pressure low.......

[amanda100wilson]

John, there are good reasons why people want to run at lower blood flow rates.  I am not saying that you cannot run at 450 but longer, slower dialysis gives better clearance of middle molecules and helps preserve the fistulabecause there is less turbulence with lower blood flow.  My nurse wanted me to run at 500, but whenI questioned this, he agreed that it was ok to reduce the BFR.  You seem to be very trusting about what you are told from your dialysis unit.  I suggest caution.  There are plenty of us around who have missed diagnoses and poor adviice in the past from 'so called experts' and treat a lot of information with scepticism.  I am not saying that I do not discuss with my nurse, but I also know that his expertise with NxStage for chronic renal failure is limited.   Example: short needles met with scepticism, but I insist that I want to use them.  We do, and now he is using them with other patients.

[tyefly]

like the short needles....... I have a upper arm fistula and I was using 1.25 inch needles in one of my button holes.... and then in the other I used a much shorter needle......  they had to order needles for me .... everyone  else seem to use the same size of needles untill I suggested something different....also  instead of the 12inch long tube needle,  medisystems  makes a 16 in longer tube needle set which was way easier to use and this allowed me to pull my own needles......  many clinics dont use those....but they are available.....  and they have blunts too  so for those who use buttonholes lke me  it was great.......  I used the same two buttonholes the whole time I was on dialysis which was two years......   

[lmunchkin]

Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR.  I can run J at 300 to 400 if I want.  My norm for him is 350 to 380.  I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him.  If they tell you to go over 400BFR, then they are wrong, period.  They are thinking In-center and not NxStage.

No, you're wrong. I run at 450 at home with no problem. Those were the instructions from my clinic.

Oh thanks JJ.  I had forgotten your expertise there!  So I will immediately go against my nephs recommendations, and run him 450 to 500 and blow his veins out!  Thank you so much for your input and advise!

God Bless,
lmunchkin
 

[Lindia]

Hi All -    we are onto our 10th day at home.   Some things are getting easier, haven't had any alarms in the last couple of days.   Most of the alarms we've had were due to oversights on our part,  like not unclamping when necessary.   I feel pretty tired  - a lot of the time - as I work a full time job, and the dialysis takes around 4 hours, so, its like a 12 hour day.   Add a 3rd grader and a home into the mix, and theres a lot going on.
  Hubby wants to take over the set up, etc -  but he is feeling more tired since we came home.   I'm not sure what is up with that, he has a chronic bladder infection, that he was hospitalized for in training, and I'm wondering if its still affecting him.    When he had his urether stents replaced last week, they put him under deep anesthia (for a 12 minute procedure !?)  and we had to stay at the hospital for hours, because his heart rate was low  -  its like I can't let him out of my sight -  everytime before, he's only had the lightest anesthia.   Anyway, he is on a prescription of 25 liters, and I wonder if that is enough ?   He's 6'3,  84 kilos -  would appreciate any input ---   THANKS ALL     

[The Noob]

chiming in here.

there are those who insist running at higher pumps speeds works good for them. and maybe thats so. but medically it doesn't line up.
to remove the larger waste, the dialysate has to cross the mebranes into the cells and pull it back and across again.
this take TIME and slow, gentle process.

think of what your kidneys would do if they were working. they would be slowly gently filtrating. not the hoover vacuum.

think of the Bounty paper towel approach: you have a spill, you grab a paper towel and swipe the spill. you get some but not all. so instead you lay the paper towel on the spill and leave it set. come back in 10 mins or so, it has soaked up all or most with little residue.

running at high speeds is harsh on the body and the access. perhaps there are some who do this with no issue but by and large this doesn't seem to be the case. even a good Neph will tell you the same.

Davita won't approve nocturnal at home, but we just do it for longer time at slower speed, slower FF and UFR.
i didn't ask. we just started doing it. within 5 days all the critical labs came back perfect.

when dh was in center, all the patients came in like sheep. no or few questions, didn't want to educate themselves, no changes. just come in and do as they were told. how many have died this last 12 months?
it seems to be an average of 1 a month. could any of this have been prevented? possibly. adter being at home with this, vs at center, i have some strong feelings about it. i almost look at what the clinic is doing as offing these patients by the treatment they give.
we just found out our clinic is now running a 3rd shift. it was too much like an assembly line. still is in my book and home hemo is superior.

dh does his own sticks and can do all his tx himself start to finish. but if i'm there, i am expected to assist.
if he has to go in hospital, we will enforce the rule that only he sticks himself. it really takes getting to the point of caring more about the damage the patient/caregiver get to take home, vs "offending anyone.
you will get there.

ps: ask for conscious sedation. general is for heavy duty stuff. don't take no for an answer.

on the script: dh is 6ft, dry wgt 210 or so. he uses 25 L, 33 FF, UF at 1.25 or less, and BFR at 350 till he takes off the fluid (comes off fast) and then slowed down to 300. he never takes more than 3.3K off, usually 2 or so and would be less if he watched his drinking more. we run 6 days a week. 4.5 hrs a night. i'd like him to go longer just a couple days a week but the chair time is hard.
we also put 2cc of heparin in the filter before priming, works great! use the bigger syringe and leave it on there to aspirate the air in filter when the prime is done.

snap and tap: we set up the machine sometimes hours before treatment. don't do snap and tap as air has chance to rise thru the lines and its not needed.

keep a check on that dry wgt. if his BP is good, he looks and feels good, its probably right. in the beginning they had his dry wgt 93K, way too low.

in no time at all you will get the hang of this. had i known what i know today, we would have went straight to home hemo. he just got his permacath out and he was able to go swim and hot tub at the hotel for the day.
carrying around 2L of fluid in ones abdomen and wearing the "PD" pants was miserable.

[MooseMom]

Noob, there you are!!   

[The Noob]

hey MOM
have had 2 months of hell. unrelated to HH.
yes still here. i missed you.

[MooseMom]

hey MOM
have had 2 months of hell. unrelated to HH.
yes still here. i missed you.

Oh no.  I have been afraid of this.  I don't like it when you are away for any length of time.  I've missed you, too.

[The Noob]

sent you PM

[Hemodoc]

Almost universally in all NxStage home dialysis training centers, the very first thing that the nurse does is crank up the blood flow speed to "help" the patients. Evaluating blood flow rates (BFR) between other nations is very enlightening. The nation that has the lowest BFR in the world is Japan. They also have the highest dialysis survival rates as well. Very little is written in the medical literature on the effects of high BFR on fistula longevity, but the nation with the highest BFR has the lowest fistula survival. I believe but cannot prove the correlation between these factors.

For myself, I run at 350 ml/min BFR. I find it very disconcerting the number of patients doing well at 400 ml/min that get told to crank up the treatment to 450 or beyond even to 500 ml/min. I personally believe that this is harming patients in America and is due to our short sighted vision of dialysis as a treatment to endure instead of a treatment to revive. Time on dialysis is much more important in many people's eyes than urea clearance. Kt/V simply doesn't correlate well to survival once you get past a set minimum. America has fallen to the erroneous conclusions of the NCDS but Europe and Australia among others did not accept that flawed studies results. Japan has rates as low as 200-250 ml/min. After all, how can you argue with success.

It is time for the so called experts to step outside of the American short sighted egocentric dialysis culture and open their eyes to how the rest of the world approaches dialysis. After all, their patients survive much longer than those here in America.

[The Noob]

but Doc, if the speed isn't high enough, they won't be able to fit that 3rd shift in..

[MooseMom]

Hemodoc, how did you arrive at 350?  Was it just trial and error, or had your neph suggested this BFR?

[Hemodoc]

Hemodoc, how did you arrive at 350?  Was it just trial and error, or had your neph suggested this BFR?

I run 40 L of dialysate, pretty much double the recommended dosage I was advised. 20 L just wasn't anywhere near enough for me. I almost gave up on NxStage. I went to 30L and then came back a month later and asked to go to 40L. Thankfully, my nephrologist understands that more is better.

To get 40 L in 4 hours, I run at 45% FF. Understanding the issues of high blood flow, I run at 350 ml/min which gives me 4:23 minute session. That is getting to about the limit of a heparin bolus. So that is how I got to this combination. Seems to work well for me so far. Most that do nocturnal run at 250-300 ml/min for 30- 60 L of dialysate. The Japanese experience suggests the lower the better. Interestingly, Japanese dialysis patients have a lower Kt/V than American patients. I believe we are chasing the wrong thing here in America thanks to the wildly erroneous conclusions of the NCDS.