Our clinic director has been replaced by a replicant! (NxStage nocturnal)

[rocker]

No, really.  There's no other explanation.

Our clinic director (she was a nurse when we started training, got a well-deserved promotion) is a very smart, warm, wonderful lady. I absolutely adore her. But....novelty is not her strong point.  She is a by-the-book person.  Experimentation makes her break out in hives.

DH did much better at first on short daily treatments.  But after a few months, he was getting more fatigued and his labs were going south.  I knew that more dialysis would help.  His prescription was for 20l, and I told her that I wanted to do more.  Well, she said, maybe you could try 21.  I would never go over 22.  Fine, I told her, we are going up.  And I honestly filled out the flowsheets, as we went up about a liter a week until we reached 30.  She would shake her head at clinic visits, but since the neph had no objections she didn't really have much to say.

About a year ago, I started pushing hard to try home nocturnal.  She was absolutely horrified. Nononono, we don't do that here.  Other people do, I pointed out.  She raised all the standard objections....what about clotting, what about crashing, what if a needle comes out, how will you monitor him.  I told her how those were handled. Well, she said, I'll look into it.

Next month, she had asked up the chain.  Nope nope, the company absolutely does not allow nocturnal.  No, you can't get a heparin pump.  I had told her about the NxStage B cartridges, which have an additional port for meds.  She had found that DaVita did not use those cartridges, so they couldn't even be ordered. I kept at her, and it became almost a standing joke between us - except it wasn't entirely funny to me.

So I managed to increase his dose to 30l with absolutely no ill effects, which gave him a runtime a little over 3.5 hours. And his labs were better, and he felt better.  But we would almost always have some clotting by the end of the run, and I often had to end him early due to clotting.  I mentioned to her about adding hep during the run, and she said there was no way to do it.  I mentioned the air port, and she turned a sickly green and began swaying and muttering "contamination....contamination...."

We've done some travelling in the past month, which leads to shorter treatment times due to less dialysate (can only hang 29l at a time, so I usually just go with 25 rather than screwing around hanging another bag during treatment) and having less free time in general.  I really wanted to give him a few longer treatments to make up for it and knock down the phos a little. So we went for clinic today, and I was determined to get answers.

I asked to see her after the doctor visit.  I worked up my courage and started "If I were to, say, HYPOTHETICALLY if I were to do something like connect a syringe with heparin to the air port...." and cringed, because this was the point where she should clap her hands over her ears and wail "Contaminaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaashuuuuuuuuuuuuunnnnnnnn...........!!!!"

She didn't even blink.  I was so astonished I could hardly continue.  "uhhhhhhh ummmmmmm..."  She looked at me for a second, then said totally casually "You know that's not authorized."

"I know, I know!  But if, say, I were to do such a thing.....what would the dose be?"  Oh, she says.  And we went on to have a serious conversation about the amount of the bolus, and how much additional heparin, and how often.

And then she said "Oh, can you do me a favor?"  Um....probably?

"Can you write me a letter describing your experience, and why you want nocturnal, oh, and if you could include whatever research you've done?  Because I really think we can get a pilot program started here.  We're the biggest home clinic in the state, and I think they'll listen to me, and I think it would have more impact if I could bring them a letter showing that patients are asking for this.  And, you know, if you could address the questions I had initially that would help."'

And that is the moment when I knew she had been replaced by a replicant.

But I choose to believe this is a serious request.  And that we have a chance.  And I have been frantically googling "NxStage nocturnal" for all the precedents I can find. (Mr. Peckham, please pick up the white courtesy phone...) If anyone has some quick pointers to bolster my case, I would appreciate it.

Woooo, that was long.  But the turnaround was so weird, I just had to get that off my chest.

  - rocker

[willowtreewren]

 

OMG!!!!!

 

This is GREAT news! Loved the story! Loved it!

Of course, this is all just hypothetical! 

Aleta

[greg10]

..  No, you can't get a heparin pump.  I had told her about the NxStage B cartridges, which have an additional port for meds.  She had found that DaVita did not use those cartridges, so they couldn't even be ordered...."If I were to, say, HYPOTHETICALLY if I were to do something like connect a syringe with heparin to the air port...."...
"Can you write me a letter describing your experience, and why you want nocturnal, oh, and if you could include whatever research you've done?  Because I really think we can get a pilot program started here.  We're the biggest home clinic in the state, and I think they'll listen to me, and I think it would have more impact if I could bring them a letter showing that patients are asking for this.  And, you know, if you could address the questions I had initially that would help."'..

  - rocker

Ask her about the CAR-172 cartridge, which has med ports dedicated to infusion.  The typical CAR-170 air port can also be used for infusion, although the pressure is higher than optimal.  You can also attach a heparin syringe pump to the air port on the CAR-170, but again the pressure there is a little high and you would also need a separate IV stand to clamp the pump just right because of the very short length of tubing at the air port.

http://www.nxstage.com/chronic_renal_care/upload/Home-At-Last-Winter-2010.pdf

[RichardMEL]

PROGRESS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well done!

You er... rock!

 

[tyefly]

  I went thru the same as you did with your clinic......    exactly....the same....   but Now I am further along than you as I have the right cartridge for extended....thats not the big deal....I am still waiting for the heparin pump to come....any day that say....   I run for 4.5 hrs  at blood speed of 370 and I do 30 L....  I use 3000 u of Heparin when I start....then 2 hours into it I give my self a 1000u bolus thru the port on the cartridge...not a big deal....  That way I make sure I dont clot the machine and loose all that blood.... Also I have no problem hanging all 6 bags  which is the 30L up all at once......  I sleep often on the machine   and works out great...

Just keep communication with your clinic....its take time to change and get new thing going and new ways to think about good Dialysis....  You know what you want and why  you just need to convince them....LOL...  keep up the good work....its all about one person at a time and one clinic at a time.....Change will happen...
I am excited for you .... 

[Bill Peckham]

I think Northwest Kidney Centers home program is a resource for a lot of programs their number is 206-292-2558. I've been doing nocturnal alone at home since 1/08 but NKC's overall experience with overnight dialysis goes back 45 years. I think you should be proud of what you've accomplished to date, now with one more push at just the right spot.

It may be that she is a replicant in which case this may be the tip of a positive trend in the availability of alternative forms of high dose dialysis. More replicantes! But it is also the case that the support for more frequent, nocturnal dialysis grows daily. I always send people to Dr. Agar's site nocturnaldialysis.org too - not the slickest site on the net but the information is top notch based on the program he runs in Australia.

Great job! Absolutely Treyfly - One unit at a time. If that's what it takes that's what we have to do.