My Nxstage Clinic will soon offer Baby K. nocturnal

[lmunchkin]

Took hubby to clinic yesterday for IV Iron.  Nurse said that they will soon offer Baby K for home nocturnal dialysis. They asked if I would be interested.  I told them I would inquire about it on my "Site".  So here I am folks!  I know nocturnal would be great to do!  Anybody here who is using BabyK at home want to tell me about it?

If it betters my husband, Im all for it!  Im working full time, so will I still be able to manage this with Nocturnal?  My husband is totally dependent on me for his care, and please don't misunderstand, I really don't mind at all!

If he does this nocturnal, will it be every night? 

Please enlighten me!  Im very interested in your experiences with it, the pro's & con's.  Thanks in advance,

lmunchkin

[Desert Dancer]

Anybody here who is using BabyK at home want to tell me about it?
If it betters my husband, Im all for it!  Im working full time, so will I still be able to manage this with Nocturnal?  My husband is totally dependent on me for his care, and please don't misunderstand, I really don't mind at all!
If he does this nocturnal, will it be every night? 
Please enlighten me!  Im very interested in your experiences with it, the pro's & con's.  Thanks in advance,
lmunchkin

YAY!!!     Oh, YAY!!  Yes, yes, a THOUSAND times YES!! Go for it!

Can you tell I'm a little enthusiastic about nocturnal dialysis?   

Here are some pros and cons:

The Pros
I dialyze every other night for, oh, 10 or 11 hours. (My prescription is for 8 hours, but I set the machine for 10 hours one night and have done it that long ever since.) It has allowed me to keep my fluids under control, because even if I gain a lot my ultrafiltration rate never goes above about 350 and is usually around 190: an easy, gentle rate.

My blood chemistry has been fantastic: I have been able to keep things like potassium and phosphorus within range without altering my diet by much (just practicing moderation). I eat chocolate, drink milk, have pizza on Fridays... pretty much like I used to, just a little more mindful of the portions (i.e.: 4 or 5 mini Snickers instead of the whole bag). I don't have to take any binders and I've recently been able to drop my BP medication as well.

I have a much lower blood flow rate, which is easier on my access (a fistula). I have yet to crash (though I think I did come close once).

Doing nocturnal allows me to sleep while I dialyze which means my days are my own.

I feel fantastic doing it this way - downright normal - and have achieved everything that was a priority for me. I'm even back to dancing 6 or 7 hours a week. When I went for my initial appointment with my new health insurance provider, their jaws hit the floor when they met me. They COULD NOT believe I was on dialysis, because they'd never seen a healthy, vibrant dialysis patient before.

The Cons

The Baby K uses a LOT of water. Your water bill will at least double. I must admit the water waste makes me cringe.

The supplies take up a LOT of room, but you're already used to dealing with NXstage supplies, so I'm sure you've got a system all in place. What I do is break everything down into treatment boxes; every box contains everything needed for one treatment, right down to the gauze pads and syringes. I'm usually done with the boxes within one hour of my supply delivery being made. I'll attach a picture.

The machine and RO system take up a lot of room. You're not taking this machine anywhere, but then it's really not that difficult to make arrangements with clinics if you want to travel. And then you don't have to worry about taking ANYthing.

They do need both a dedicated electrical circuit and a dedicated tap.

Not only is there a dialysis machine to clean and maintain, there is also an RO system that must be fed and cared for. Honestly, though, maintenance doesn't take up much time at all. The time to set up the machine for the treatment takes exactly 35 minutes - a working 35 minutes, meaning you'll always be doing something WHILE the machine is doing its thing. If you include the rinse (I always rinse the machine before treatment), add 15 minutes. That just involves pushing a button and walking away. I also regenerate my water softener earlier in the day - turn on the tap, turn the dial to 30 minutes, walk away. Easy peasy, lemon squeezy.

Oh, I could go on and on (hmmm, already have, maybe)! If you have any questions, ask away! I'd be happy to answer any questions I can for you! And if you want any more pictures, let me know - I've got tons.

[Bill Peckham]

I think you could do every other night dialysis with a Baby K and get a nice high dose of dialysis, while with the NxStage I like to go two days on one day off. I think the Baby K would give you more dialysis per minute (the NxStage gives more dialysis per unit of dialysate).

[lmunchkin]

Desert Dancer thanks for the pix's. I do believe there is less supplys with NxStage, but not as many supply's compared to PD. PD requires alot of storage.  The machine looks like it is all one piece!  Is that true?  Looks exactly like ones in the centers, maybe a hair smaller.

Bill, how is it to travel with?  Is it something that is easy to move around? When I weigh the pro's & con's. I really think that NxStage may be a better fit, for our situation.

If he got to where he needed to do more, then I can always pick up another day or even a little longer. I could always have doctor to increase his units of dialysate.

I appreciate you guys doing that.  I always appreciate the input of those who are doing it first hand, than someone who has never experienced it and trying to sell it.

Again thanks and the pictures really gave me a visual of how it is!   

lmunchkin

 

[Bill Peckham]

Desert Dancer thanks for the pix's. I do believe there is less supplys with NxStage, but not as many supply's compared to PD. PD requires alot of storage.  The machine looks like it is all one piece!  Is that true?  Looks exactly like ones in the centers, maybe a hair smaller.

Bill, how is it to travel with?  Is it something that is easy to move around? When I weigh the pro's & con's. I really think that NxStage may be a better fit, for our situation.

If he got to where he needed to do more, then I can always pick up another day or even a little longer. I could always have doctor to increase his units of dialysate.

I appreciate you guys doing that.  I always appreciate the input of those who are doing it first hand, than someone who has never experienced it and trying to sell it.

Again thanks and the pictures really gave me a visual of how it is!   

lmunchkin

 

There is no traveling with it, at least not if you stay in compliance with AAMI, the body that sets water/dialysate standards. George Harper famously loaded his, I believe it was a series H machine and his RO, into a camper. Transferring it from his home to the RV required a block and tackle pulley system I believe. So it can be done but back to AAMI.


The Association for the Advancement of Medical Instrumentation (AAMI) has established chemical and microbiologic standards for the water used to prepare dialysate. One part of their standards is that incoming water has to be tested periodically. That's where bringing a RO/standard machine onto an RV isn't supported by current regs. NxStage gets around this by supplying dialysate premixed in bags. The machines look very different but for the most part they're the same, except when it comes to dialysate.

Dialysate is really about 90% of the problem that a new home hemo device needs to figure out, based on current technology there is no perfect solution. Each choice comes with its own trade offs.

[lmunchkin]

Well, I use the Pureflow system where I make a 3day batch of dialysate.  When installing a new PAK, I get a water sample to test  and send to lab and it is called AAMI.  I do not use premixed bags unless Im traveling or some sort of malfunction takes place.  Iam also required to test Quarterly AAMI, Pak Endo/colony and Sak Endo/colony.  This was the hardest thing for me to learn at first.  But it is like second nature now, and I realise the importance of it. 

Have you tried the PureFlow with NxStage? It is fairly new, but has been around for awhile.  I believe Aleta used Pre-mixed bags and then they got the PureFlow for Carl before his transplant. Can't recall whether she liked it or not, but I really like the PF.  I just hate lifting bags.  Im such a weaklin!!!

But yea, when using PF, you have to do a water test for AAMI.  My water has always tested fine!  Knock on Wood!

lmunchkin

 

[Desert Dancer]

Desert Dancer thanks for the pix's. I do believe there is less supplys with NxStage, but not as many supply's compared to PD. PD requires alot of storage.  The machine looks like it is all one piece!  Is that true?  Looks exactly like ones in the centers, maybe a hair smaller.

Yep, it is exactly like the ones in the centers, just a little bit smaller. It doesn't have all the screens of the ones in the centers, either; for example, there is no sodium modeling screen.

[boswife]

Just curious, are they offering you to use the babyk (and not opting you the nxStage) if you want to do nocturnal? or is it an either or?  Right now, we're looking towards going 2 1/2 more hours to make the 6 hour "extended" but not until im pretty sure i can function if woke up by an alarm.  For us, i *feel* like we'ed want to stick with what we know, but i am sooooooooooo interested in this thread as it is a possibility in our future as well.. 

[lmunchkin]

Boswife, they are going to soon acquire the BabyK to offer home dialysis, as another "Option".  Like you, they are not going to take our NXSTAGE away from us.  It has really done wonders for my husband and quite frankly, I don't want to change either.  I love this NxStage and I know you do too.

So you are going to do 6hrs on extended?  That is awesome! How many liters of Dialysate will you use, 30 to 40 would be my guess?  Just the other evening, J wanted to dialyisis out side on deck, and I wheeled that puppy outside again!  It was a beautiful night and the air was crisp, but not cold, we loved it.  That was the second time in a month that we did that.  Gonna do it more often, weather permitted!!!

Yea, I agree, the Baby K might be something for future.  I truly believe Nocturnal is the"ULTIMATE" dialysis.  I don't have to "Do" it to know, cause I know that the longer the better as evidence in this NxStage which is not Nocturnal, but it is more days and longer times.

lmunchkin

 

[tyefly]

When I first started talking to my insurance company about nocturnal  they always told me that NO one did nocturnal with Nxstage ....  but they said that there was one company who did nocturnal with a baby K....  So I called them and yes they do let some people do dialysis at home using a baby K....  but there was a catch..... I needed to be sure to be hooked up to the machine by 10  or 10:30 at night so that I can have a monitoring center monitor me all night long via phone /computer line  .... and BP pressures every half a hour and one call from  the center in the middle of the night.....  I needed to have a dedicated phone line for this system, special water hook up and special electrical hook up...  The biggest requirement was to be hook up by no later than 10:30pm..... this would be for 5 nights a week...  This unit was not portable at all...it rather big....  I went with the Nxstage system as it was portable.... it took me 8 months to convince my center and Doctor and insurance to let me do it extended..... and I was successful..showing all of them that it can be done safely.  Doing extended doesnt have to be at night nor does it have to be during the day...  I ended up doing every other day for 7 hours....  worked out great... I felt great and labs were great...  Now transplanted and doing great..... I dont feel any different than when I was doing extended....  but I do have more freedom....LOL     I took my nxstage camping...to my beach house,,, on road trips to motel....  you cant do that with a baby K....but then some dont travel....... 

[boswife]

oh tyefly, im so happy to hear of your 'freedom' and that your one who will cherish it    Makes me happy.  And imunch, as far as us doing 'extended' well, im working on that still with hubby.  I had to 'work' on him to extend the extra hour we are doing, and now, well, i just keep reading the benifits of the night time.  See, we get up at 4am, hook up 'by'  5, done by 830-9 , so even if i could manage getting up a couple hours earlier, and 'napping' in my chair beside him, it could work well.  Havent mentioned it to nxstage, or neph yet, but we shall see.  Also, bo doesnt like to sit that long, and he only sleeps about a 4 hour stretch so ..........theres another factor to leap.  And, his pressures (A + V) are so low as it is i dont know if we can slow us down anymore w/0 more dialysate... (using 20 at this time going at 310BFR, taking off 5-1.5)

[willowtreewren]

Lmunchkin,

Have you tried the PureFlow with NxStage? It is fairly new, but has been around for awhile.  I believe Aleta used Pre-mixed bags and then they got the PureFlow for Carl before his transplant. Can't recall whether she liked it or not, but I really like the PF.  I just hate lifting bags.  Im such a weaklin!!!

We actually preferred the PureFlow once we got used to it. We sometimes had to use the bags if we came home from work and the SAK had not worked right. Of course we traveled to visit our daughter in Massachusetts pretty often and had bags shipped there. Customer Support got so used to shipping bags to her that they got mixed up and started calling her to remind HER to send in her order. LOL!

Carl is doing well seven months post TX. But I keep up with the NxStage user's group. You never know if something might go south.

Carl was never very interested in nocturnal. Go figure. We just did his treatments in the evenings after work. So we would not choose the Baby K. We enjoyed (still do) the freedom to travel when we want.

Aleta

[lmunchkin]

Im with you there, Aleta.  So good to hear Carl is doing great.  I like knowing that we can get the Baby K at home if needed, but I, like you, want to be able to go when we want.  The PureFlow cabinet has to stay, but the cycler is very easy to detach and wheel just about anywhere in the house, but of course we have to use the premixed bags when going into other rooms.  We are content doing him in evenings when I get home from work. He is doing very well with it.

Boswife, I think those numbers are very good. I think you might could raise BFR to 350 to get a higher BLP number. Your BLP determines the amt. of blood (In liters) went through the machine for cleaning.  Depending on his BP & Dry Weight is what I go by.  Most time I run J. at 350 to 400 BFR so as to get blood liters processed of 60 to 75.  Last night, he had alot of fluid on him (He celebrated) so I took 1.5 at 380 bfr increased dialysate 3 liters to 23 and got a blp of 81.  Ive never got that many liters of blood through the machine but still did it in 3:30 hrs.  I could not do that on 20L dialysate so I increased it on the Pureflow, cause it would waste otherwise. 

Have you noticed any dialysate left after a 3 day use?  I'd say it is close to 2 to 3 liters.  Thats wasteful, so I put it to good use! LOL

Yea, Im gonna stick with NxStage.  It has suited us very well and really is a great machine! But it is nice to know that we have another option available to us!

lmunchkin

 

[boswife]

ya know imunch, (crackes me up to call you that) he gets 64-65 at that speed and,,,,,,,, we have *O* left at the end of a 3 day run.  actually had to set machine to 19 Lt's so we didnt run out on the 3rd day.  Their not sure why that is as we are very maticulos about how we clamp and all. Ya know, i like him to go 3 1/2 hours slow so as to not hurry that fluid take, and now i see how your doing that even with the higher BFR.  I love that your flexable with J.  I did ask the "nxStage educator" about adding dialysate on my/his (lol) 2 day run, and she said to ask his neph, but yes that was ok with them.  It's funny that i've become more of a not wanting to mention too much at apts.  because im too afraid of them telling me NO when i KNOW better..lol   Dont know if this is one of those times to just do.   I too hate waste and thats the only thing i dont like about the 2 day run... draining that stuff away enough to be able to pick up the sak and feed to plants.

[lmunchkin]

I would just ask the neph if you could add a few liters of dialysate or maybe just change you Sak from 60 to 50, so as to get 25L instead of 20.  The problem I have with that, is you would have to make a two day batch instead of 3.  I know you dont like that, cause it just so time consumming.  What you might do (and this is something that shouldnt be mentioned at appts) and I have been known to do this, is on 1st day when he is holding the most, increase Dialysate to 22 or 23.  Then the next 2 days, run at 20.  If the liters are in there, it wont alarm, but if it does, then you have pulled most of his fluid off.  He may have 0.1 left, but the majority is off. 

I have reflected my flow sheets accurately and honestly!  My clinic asked once what happened, and I told them.  They have never asked me again. If it was effecting his health, then Im sure they would say something, as I would want to know.  But they know that you and I are going to do whats best for our husbands care, that is a fact!  So they just trust our judgements.  If there is something that maybe we dont see that is wrong, my clinic will let me know.

My neph has always known of my willingness to care for J. personally.  She is the best, and listens and consults me in all things.  She gives me what ever I have asked of her and if it is something she feels will not be good for J. she will discuss it with me.  She really is an awesome Neph, but an even better person!  J. don't want any other neph and nither do I.

Next time you make a 3 day batch, run 22 or 23, then run 20 the 2nd day (which you will get) and run 20 the 3rd.  See if it alarms no dialysate!  If it does, and he has a whole lot more fluid to remove, then hang a bag (5L) and run it in him to finish it out.  Ive never had to do that but one time, but I did it deliberately because he need it removed when we first started NxStage.

Boswife, how is his IV iron injections going?  I know you had said he had to have them.  J. has to have them too, but its not that frequent that they do that.  It will help the Epo to work.  9 times out of 10 if your iron is low then your having Epo too.  J is back on low dose for now!

lmunchkin

 

[boswife]

according to the nxStage educator for our area, they said it would be ok to add a few on those days.  That it was a good idea   So, when you said you ran him at 380, 23 liters, and ya went 3 1/2 hours, what was your/his UFR?    Bos FF is 32 so figure that may make a difference as well, but curious as to what what you plugged in there. 
As far as the 'iron'/hemoglobin situation, we give that at  home and are giving 10 mL's every other week for (3x) and epo 9000  . kinda crazy it seems but im so glad their not afraid to bump him up.  I just wish i knew why it droped like it did when his hemoglobin  is normally at 11-12 easily.

[lmunchkin]

Ok, looking at the flow sheet for that day: Dialysate-6.6  UF: 0.50  BFR: 380. 2hrs into the trtmt. I dropped Dialysate rate to 6.0 (Cause when I toggled for Volume #s, I saw I was going to runout of dialysate) and increased his dialysate volume to 2.9 =22.9liters.  At the end of trtment his total time: 3:3l  Tot. Dialysate: 22.9  Total UF: 1.5  BLP: 81  No Fluid added.  Ending BP was 110/66.

Another thing that might help your Bo, is when you do your snap/tap and you stop machine to set perimeters, tell him how long You are going to D. him.  Then while you are setting perimeters, watch top left corners while setting perimeters for the time you wish. It can be done by several different sinario's. 1: low BFR 2: lowering Uf 3: Dialysate rate low or 4: less FF.  Now my neph will not allow my FF above 33 or Below 30.
Another way to figure it on time is to Divide 20L by #of hours, and what you are going to take off by the same # of hours;  EXAMPLE;  You want to remove 1.0 from Bo. You want to do it at a fairly slow BFR of  380.  And you want to give him good 3 hr cleaning.  So you would take Dialysate (20L) :- 3= 6.6  (this is what you would set D rate at (green)) then you would divide what you want taken off him 1.0 by 3= .33 (UFR (yellow).  Now not sure what your FF would be, but check to make sure it is within the requirements okayed by your neph.  It is probably about the same as mine.  Now when you do it this way Bosw, it may vary a little in time.  You can manipulate those numbers (Green or Yellow or both) within your FF limits, to reach the desired time you wish!  Is any of this making sense?  I feel like I explaining in circles.

They will not let me give IV Iron Inj. at home, but I do give Epo.  J is 2000 epo once a week.  I wish they would let me, but they dont permit it, and that is ok with me.  It is very hard to keep Hgb at its desired level, and I would not worry to much about it if it is close, you both are doing fine with it, IMO!  I have seen patients whose was way out of wack, but Im sure there is a reason for it, if you get my drift!

Man, I wish you guys lived closer to us, I would love to get with you on this stuff!  Hope this helps you!

lmunchkin

[boswife]

ya did GREAT!! painted a very clear pic  (once i printed it out and held it in my hand instead of just reading on here..lol)  as always, thanks for your time and care.  Im getting soooooo much better at 'touching' the machine and having it do what i want.  I was so afraid of hitting something and making an alarm that it inhibited me for a LONG time..    So glad im loving it now and being its friend...  Thanks for helping me 'get' there 

[lmunchkin]

Boswife, you are so much like me about doing something wrong.  But nurse trainer told me that these machines will not allow you to do anything to hurt the patient, it will alarm and stop the pump immediately. Not that I or you would do that, but when you are still learning and doing things meant to help, it could happen and thank God that the machine is designed with the mechanisms to prevent such a thing from happening.

Bottom line, if I want the longer time to slowly dialysize J. Im just going to add more Dialysate, and if I need to hang a bags to get that, then I will. I want good dialysis for my husband.  But the reality is that J. deserves alot of credit.  He really has his fluids under control.  I am so very proud of him, cause he makes it easier for me to do just 20L and not adding to it very often!

Glad my "circles" made some sense, cause usually it doesnt!

lmunchkin