We've gone rogue (sort of)

[rocker]

Well, we've started do-it-yourself nocturnal, with the sort-of not-disapproval of our FA.

I finally told her "We're going to do it, and I'm not waiting for approval, but I am going to be honest about it."  So as we were discussing it, she slowly talked herself into "Well, one of our selling points is that you can do it any time of day you want to, right?  And we don't have a minimum blood pump speed...lots of our patients have to run slower because they can't handle higher speeds.  So if that works out to be eight hours or so, in the middle of the night...."

BUT, we are not getting a lot of medical guidance because she doesn't have experience with it.  I've brought it up to the nephs at several clinic visits, usually I get a nod and vague smile and a comment like "Yes, many people like nocturnal." or "Oh, yes, we have a clinic nearby where we do nocturnal!"  But nothing specific.

I'm a bit worried about the dialysate, because he's still on a .1 K bath.  She and I discussed raising that to a .2, but neither of us are quite sure.  I did the first 8 hour run on a lab day, and she ordered a post- K so that we could have some idea of what we were looking at.  Pre- was 3.8 and post- was 2.8, so we are not worried so far.  We're still dithering on that, and I've been having him drink a few ounces of orange juice after he comes off.

But his current prescription is coming from me.  We are running 7-8 hours, 30L of SAK 302, FF28, bpr 260.  He's been running 4.5 hr at 30L with FF30 for a few months now, so this isn't really a radical change.  We start with 3000 heparin, and give 1500 every two hours.

The first few nights have been....enh.....we're working through it.  He has trouble going to sleep on treatment (how ironic, he never had trouble sleeping on the machine before!) and has been staying up half the night.  We had a hypotensive episode, which we dealt with ok.  It woke him up, he woke me up, I put his legs up and gave him a little saline and we were fine.  Though I am both more and less reassured by this.    I'm reassured that it woke him up, otoh, his draw rate was .3 and we weren't taking much off so wth?

So, I guess I'm just obsessing and worrying, like I always do.  If anyone has any additional tips, let me know.

  - rocker

[jbeany]

The only tip I can offer is one from the stand point of someone who was the first patient ever trained on NxStage at my center.  Don't worry so much about guessing and doing things by trial and error.  You are there; you are doing it daily; you know what to watch out for.  While it would be reassuring to have an experienced team pointing the way, in truth, even then, you'd have to do things on your own to get it to work for YOU, not that generic one-size-fits-all patient.

[willowtreewren]

 

I would suggest getting a heparin pump to eliminate the need to give heparin every 2 hours.

But the BEST thing for you to do is join the NxStage Users forum and Yahoo group. That is the very, very best place to get the expert information you need! :-)

http://www.nxstageusers.com/

On the left you will see links to the listserv and forum.

Aleta

[rocker]

Hi Aleta!   

I would suggest getting a heparin pump to eliminate the need to give heparin every 2 hours.

Hahaha, trying to get a heparin pump is one of the things that delayed us from trying for this long. That totally freaks out the clinic for some reason; of course, we are the first home dialyzers in the history of the planet to ever want a heparin pump.

I have an adult daughter who will. not. leave. my house, and I taught her from the beginning the basics of dialysis, the machine, dealing with alarms, emergency rinseback, etc.  So since she tends to be up all night anyway, we spent a couple weeks having her give his heparin during treatment and now she does it while we sleep.  She knows when to wake me up.

Today in one of my obsessive moods, I looked up everything I could about access disconnection and while I am much reassured by my research, I still plan to get an alarm.  I think I've settled on the wireless DRI Eclipse.  I ordered leak alarms for the floor the other day (not specifically for dialysis, but for my leaky basement ) so I'll have that as well.

Any change freaks me out, but I am biting my tongue and powering through this one.  I think it's better for him in the long run.

  - rocker

[willowtreewren]

What a great solution, Rocker....put the girl to some good use! 

Aleta

[Bruno]

You really need a heparin pump which will automatically give 1.3 every hour (I do a 5.0 bolus at connection) and automatically stops an hour before finish. The other thing I would test is your bloodwork before and after 8 hours to make sure everything is holding up. In my case we checked my potassium as I tend to loose it over a session.
The best site for advice is Dr John Agar at Geelong in Australia.
Best wishes for your success.

[Bill Peckham]

I think the potassium is the main issue (though getting a heparin pump would make things easier - hopefully your unit will come around), I switched to the 304 bags (2K) and I've added fruit to my diet. Actually having a banana is my reward for dialyzing, so I have one each morning after I get off, and if I'm dialyzing that night too I have an orange as well. (I had forgotten how much I like a good orange).

The thing about a post blood draw is that you are measuring the blood space before the rebound - the rebound is what happens as soon as we get off dialysis and the solutes even themselves out among the three fluid spaces - and it can take an hour or two to complete. So doing a pre blood draw before the third treatment in a row, is how I would check my levels (phosphorus too).

My experience has been that potassium and phosphorus are only a problem to the extent that I limit my fruits and dairy due to habit, as long as I eat right my levels stay in range.

[tyefly]

Good for you Rocker....   I was doing the same but after 10 months my unit came around and bought a pump...   I have not had any problems with too low of potassium or phos...  but then I eat what I want all the time.... but Iam still doing the 1 k bags... I do bags all the time as I like to go places and never know when I want to go....I have heard that there are 2 k bags now.... but I am not convinced to change over and then I may have to restrict my diet...  the only restriction I want is lower calories....  and I do watch how much I eat.. trying to lose a few....guess I keep thinking that I need to be down on weight so that If I get a small kidney the poor thing doesn't have to work as hard....LOL..
 
My clinic gave be a bed wetting pad.... its huge..  I could sleep on it..... I dont use it...  and never will.... I dont worry about loosing my needles....  taped in three places.... I use between 10 and 15 pieces of tape.... its not coming off..lol   
I sleep in my bed and  I do hang on to my lines all night... that way when I turn over I just move them with me..... I love nocturnal... my clinic didnt have a clue about any of the nocturnal stuff.... I learned from people on here...( thx Bill Peckham ).....and told them what I knew and they went for it.....  Doctor just keeps telling the clinic dont worry about me...  I can figure it out..... and I guess that is true for people like us... when we want something we go get it.... make it work and move on.....   

Good luck and may the pump be in your future...

[rocker]

So I got an email from my FA today, and one of her concerns is that we haven't been putting blood pressure on the flowsheet. I've had my daughter write down the machine readings at the times she gives heparin, but not to wake him up for blood pressure, and he hates sleeping with the cuff.  She points out that the flowsheets are legal documents, and that without blood pressures we are not satisfying the legal requirement for "patient monitoring".  For now, we could cuff his ankle and have her take blood pressure there, but that won't work if we get a pump.

So for those of you with heparin pumps, how do you satisfy the "patient monitoring" requirement?  I know that there are those out there who sleep right through with no vitals taken, right?

Is this just something we have to dick with until that faraway day when NxStage gets FDA approval for nocturnal?

 - rocker

[rocker]

Forgot to mention that after the first week or so of 7-8 hour treatments, we had a repeat lab for phosphorus.  In a week, it had gone from 5.9 -> 4.7.  I think this is the first phosphorus we've had below 5 that wasn't associated with a hospital stay.  So our nurse/FA is already believing.

[Bruno]

I use a heparin pump and keep a flow chart that shows ...blood pump speed, arterial and venous pressures, weight before, weight after, blood pressure before, blood pressure afterwards, time on, time off, heparin off.
I don't record blood pressure during a session, although I have on occasion, because I know through training how to set up a session so that I will not experience blood pressure problems.
I was not allowed to go nocturnal unless I had a test run with blood taken before and after because there are other things to look out for which are just as important as blood pressure, potassium levels, for example.
My heparin protocols (hourly infusion, bolus at start up, stop 1 hour before finish) were established over a training period of 2 months as dosage varies depending upon the patients needs.

[Desert Dancer]

So for those of you with heparin pumps, how do you satisfy the "patient monitoring" requirement? 

Hi, rocker! I know I'm coming to this a little late, but I thought it might be helpful for you to see a flowsheet from a nocturnal patient. This is one of mine (hopefully it uploads and is big enough to see).

I know that there are those out there who sleep right through with no vitals taken, right?

Yep. My nurse told me she'd like me to take vitals if I happen to be awake, but it isn't required so I just do pre- and post-vitals.

For now, we could cuff his ankle and have her take blood pressure there, but that won't work if we get a pump.

I have a Fresenius BabyK - not a NXstage - so pardon my ignorance, but: what does a blood pressure cuff have to do with a heparin pump? My heparin pump is built right into the machine and injects my heparin automatically each hour; it sounds like your set up must be radically different!

[tyefly]

I dont not take blood pressure during the run.... I am sleeping... thank you .... I do record BP at the beginning and at the end after I wake up .... I do weight my self at the beginning and at the end... I dont believe that there is any more requirements than that....  I am sure that every clinic has their requirements....my heparin pump wasn't working on a few nights and I would just set my alarm and give my self a bolus of heparin 4 hours into the run... like 3000 units....  I start with 2000 units....  I have never clotted... 
Some people who use short daily still think they need to take a blood pressure every 30 minutes and sitting and stand up and all of that stuff.... I dont think its necessary .. and when I was doing short daily I didnt.. and my clinic didnt say anything about my paper work.....

[rocker]

For now, we could cuff his ankle and have her take blood pressure there, but that won't work if we get a pump.

I have a Fresenius BabyK - not a NXstage - so pardon my ignorance, but: what does a blood pressure cuff have to do with a heparin pump? My heparin pump is built right into the machine and injects my heparin automatically each hour; it sounds like your set up must be radically different!

Whoops, sorry that wasn't clear.  It's not that it has anything to do with the pump, it has to do with corporate "monitoring" requirements.  The patient must be monitored during treatment, and that monitoring must include taking vitals.

Our flowsheets have a column for blood pressure at each checkpoint.  Well, if you're not taking blood pressure, however could you be monitoring the patient?  And if you're sleeping through the entire treatment (as one would if one only had a pump...), however could you be taking blood pressure?

So it has to do with making the flowsheet look like a "normal" (short daily) flowsheet, so that no one at corporate gets all excited.  So that means filling in as much data as possible so that there's nothing obviously "wrong" with it.  Like missing blood pressures.

  - rocker