Technical Support

[Meinuk]

I've gained some home hemodialysis perspective over the past week.  (just when you think you know enough, there is always more - or as I have firmly decided, "Technology hates me.")

When you dialyze at home, you are the Dilyzor, the technician, the nurse, the engineer, the warehouse manager and the janitor.  If you have a partner, then you can split the tasks.  If you live alone, then you are wearing many hats and tool belts as the case may be.

Luckliy, with NxStage, support is a toll free phone call away.  24 hours no less.  I am pretty self sufficient, and have a low tolerance for being on hold.  Which is why, when I first started in November 2007, I hated calling NxStage, because they were experiencing growing pains and I always got the answering service.  By the time I got my call back, I had troubleshot the problem on my own.  But NxStage seems to have remedied that problem, this week, each time I called Technical Support (and there were at least eight calls); I got a technician fairly quickly.

Monday (day off from dialysis) - it all started with a power surge.  While lying in bed, I heard a loud pop and the lights went out.  I got up, investigated and saw that nothing blew up.  I would deal with the circuit breaker in the morning. I went to sleep.

Tuesday - after a bit of adventure, the circuit breaker is re-set, I am dressed for work, and about to make a batch for the night's dialysis run.  I get the warning "recovery from power failure" warning.  I hit go, and I get a red alarm on the pureflow (I think it was an A82 - I can't remember - it isn't in the book) Time to call NxStage.  (I made coffee; it was going to be a long morning)  The technician was helpful, he walked me through a pureflow reset.  (unplug from the wall for 10 mins and try again – while resetting all of the cables) but after trying that twice, I had to call back and say that it didn’t work.  The technician commiserated with me, and sent a new Control Unit overnight.  I dialyzed using bags and my heater that night.

Wednesday – I came home to a large box in the foyer.  There was my new Control Unit.  I dragged the awkward box it into the apartment and sat in my chair and stared at it for a while, then rolled my sleeves up and got to work.  Replacing the control unit is fairly easy.  All of the connections are well engineered, and it took me maybe 15 mins from opening the box to turning on the new control unit in the machine.  I dragged one of my many Purification Paks (to think that once I complained about having too many Purification Paks (5)) from the closet and started priming.  At this point, I was tired, so I decided no to dialyze, I’d just add a session on Friday.  Good thing I didn’t dialyze, An hour into the prime of Pak #2, there was a leak.  I stopped everything and dried everything and tightened the blue line – which had come undone at the middle joint) and finished the prime.

Thursday – I woke up, got ready for work, made a new sak.  Everything was perfect- including my evening run.  Now, if just the RMA would show up so that I could get the old control unit out of my house – all would be well.  Uneventful 25L run.  Things were looking up.

Friday –  an uneventful 20 Liter run.  TGIF.

Saturday – In the morning I drained the balance of my sac and made a fresh one.  My apartment was clean, everything was organized, all was well.  With 30 mins left in a 30 L run, I got a pureflow alarm.  Leak in the Pure Pak.  I returned my blood, and set about trying to fix the problem.  I called NxStage.  (Disclaimer:  I was exhausted, frazzled and my last nerve was shot)

I got through to the technician quickly, he thought that it may have been a waste line leak, not the pak.  He advised me to close the clamps, remove the pak and dry it out and then try again. 
I asked, “you want me to re use the Pak?” 
He said “yes”.
I said, “well, shouldn’t I cap the sac and pak with a sterile syringe like we do when testing chloramines?” 
He said, “No, just clamp them.”

Well, let me tell you, that exchange set me off.  Everything that has ever been drilled into my head about a sterile circuit was violated.  I can clamp instead of cap?  So, why were all of the procedures drilled into me?  Let’s face it, I was mad and looking for a fight.  And the technician took me up on it.  So, I wasn’t just getting technical support, I was venting (with a point, in a highly educated manner… but still it was venting and not very constructive – NxStage will still say “clamp don’t cap”, and my unit and the State of NY will still say “cap don’t clamp”.   For two hours, I dried out the Purification Pak chamber, using towels and a blow dryer.

Sunday – Time to drain the balance of the sac, it drained no problem.  The old Purification Pak # 2 is in the dumpster (I dropped it off on my way to a walk in the park)  I came home, and tried to end the drain.  I kept getting a pump error (A62).  I called NxStage.  The technician told me to reinstall the Purification Pak.  I told him that the technician last night told me to discard the old Purification Pak.  After some fiddling, resetting and trying other fixes, I finally gave up and dragged Purification Pak #3 out of the closet.  I hooked it up with the technician’s guidance, and was able to complete the drain.  Then he told me I could prime this pak and go about my business. So, I did, for about half an hour.  Then the alarms started again.  A 51 – too much pressure in the Purification Pak. I looked it up in the book.  I followed the instructions, released the pressure, and it kept alarming.  I called Nxstage.  I got the same technician, he walked me through what I had just done, and it seemed as if all was well, we said good bye and just as we were hanging up.  (no, joke, this could only happen in the movies) The alarm went off.  I called NxStage, spoke to the technician and he told me that the Purification Pak (#3) is bad, and I’d have to send it back to NxStage.  He also sorted out my RMA for Control Panel #1 sitting in my living room.  I told the technician that I would be hanging bags for my next run, and I will try to prime Purification Pak #3 in the morning.  For today, my interactions with Pureflow are over.

Sunday night during a 20L run using bags.  Alarms everywhere.  The pureflow is off, but I have attached my drain line to it.  But it won't drain.  I assume that the unit needs to be on for the drain to work, and I turn the unit on.  But it is alarming again, leak in the purification pac.  I sigh, grab a tall kitchen garbage pail, and the line is now draining into the garbage pail as I type this.  Sigh.

In Conclusion:  My Pureflow saga is far from over – but I learned something.  When things go wrong, and then snowball (as they did for me) it is important to just stop, take a deep breath and then go on.  Thanks goodness, NxStage has the bag/heater option for those of us on Pureflow.  NxStage was prompt and efficient with their technical support.  The debate that I got into on Saturday night was of my making.  I was outraged, and I had a point to make.  If faced with the same situation right now, I’d probably make the same point (inconsistency in procedure and re-use) But I would have been nicer about it.

[Roadrunner]

Meinuk,

Sounds like a stressful few days and who needs that!

Is is possible that the tech just wanted you to clamp the PAC and SAK and leave them connected and just put the SAK on the floor next to the pureflow?  If he really did want you to separate them then he made a big mistake.

Better days are ahead.  Spring is coming.  The snow is almost all gone and the pussywillows are swelling.

[twirl]

you are so brave
do you stick yourself
you are my hero and I look up to you
I could never do that
 

[Meinuk]

Is is possible that the tech just wanted you to clamp the PAC and SAK and leave them connected and just put the SAK on the floor next to the pureflow?

No, that was the debate.  He told me that I could clamp the pure pak and remove it, and clamp the sac and use it to dialyze the next day.  I attempted to "educate" him.  He debated me.  We came to a contra temps, and I told him that I would be wasting the sac and hanging bags.  His attitude was "whatever".  He continued to walk through trouble shooting with me, but it was late, and as we now know my troubles were far from over.

I wasn't very nice, but he was stroppy too.

I am tired, a bit sad, but reflective.  I've learned a lot about myself and the way I've been reacting to these "bumps" in the road.  I need an aggressive outlet, so this morning, I signed up for Tennis Lessons.  Maybe smashing a ball rather than NxStage reps would be a good thing.

[Meinuk]

Thanks for the compliments Twirl.  I don't feel like a hero, I feel like a survivor.  Last year, I was in center, not sticking myself.  But thanks to Epoman, this site, my family, my training nurse and my Rockstar, things worked out for me and I am able to dialyze at home.  We are all in this together - just a post away.

 

Anna

[okarol]

Holy Cow! Amazing story. By the time you've been through this a few times you could set up a couple more chairs in your living room and start your own clinic.
I admire you doing this all by yourself, I don't know if I could. Good luck - hoping all goes better from here on out.

[kidney4traci]

OMG, I am amazed that set up your new pureflow all by yourself!!  That is no small task, even for my husband that has muscles!!  You are awesome, hear you roar!!!!

[kitkatz]

You go get them Girl!   

[Bill Peckham]

I think my four years on the Aksys has made any hassles with the NxStage seem acceptable.

In general if a procedure doesn't feel right don't do it. It's better to be too cautious than not cautious enough.

For the drain line issue - I would always have on hand a 30cc syringe with a peanut attached. A couple pulses of air was usually enough to get things flowing - the drain line does not need the PureFlow to be operating.

I don't understand the advantage of the hard plastic drain lines that come with the PureFlow v. the disposable drain lines. Drain lines inevitably get clogged up. I found that I can get my disposable drain lines to last 6 or more weeks by not letting them get dry. I clamp the line after use so that it never dries out. It forms the crystals when it drys, so the lines last longer if they're always filled. If I was using the PureFlow I would use a disposable line instead of going through the PureFlow unit.

[jbeany]

Some days, the technology gremlins win, don't they? Glad you made it thru!

[Meinuk]

Sunday 10:30 PM  My 20 L run finished.  I am manually draining my garbage pail full of used dialysate.  I opened the Pureflow unit and started to think.

I took BP's suggestion, and tried to flush the line - but I used a bleach solution.  Nothing would go.  I took a deep breath and called NxStage.  I got a really sweet support rep (I was also on my best behavior), we talked about what I saw.  A flood in the back of the unit (internal) where the pure pak would be.  I told him about my thoughts that the drain may be occluded in the Control Unit.  He agreed, I pulled out the drawer, and there was flood in the back of the empty drawer.  He told me that it must be control unit #2.  So, he is sending me Control Unit #3 to be here on Tuesday, along with a spare pak.  I'll use bags and a manual drain line until then.  (I have no Dialysis on Monday, and I am being taken out  - a sympathy date - but I'll take anything I can get!)  Tuesday, all being well, I'll replace the Control Unit, and hopefully this will all have been a learning experience - relegated to the past.

I know that it is cliche, "when it rains it pours", but in the end, it will all work out.  All in all - it is STILL better than dialyzing incenter!  (and that is saying a lot)  When I was on the phone tonight during my run, after giving her a play-by-play, one of my oldest friends reminded me that I sounded great, and she also reminded me of my temperament when my BUN and Creatinine were really high.  I am used to living my life on fast forward, pushing extremes.  CKD slowed me down, but NxStage has given me some of my "gumption" back.  Because I am well dialyzed (and I've had my iron infusions), I had the energy to handle this week long situation and work full time.  A year ago right now, I would have crawled into bed and stayed there until it all went away.  So, I tend to look at this as a test.  And I think that I passed.  (I maybe lose marks for the fight with the customer service rep)  But all in all I survived.

I'll post when Control Unit #3 is installed and working.

[Bill Peckham]

Some days, the technology gremlins win, don't they?

So true. Computers, cell phones and the System One. At work there is all sorts of technology to go sideways and mistakes are public and expensive, but sometimes a sign is just doomed.I'll make it five different times for five different reasons.

[Bill Peckham]

Sunday 10:30 PM  My 20 L run finished.  I am manually draining my garbage pail full of used dialysate.  I opened the Pureflow unit and started to think.

I took BP's suggestion, and tried to flush the line - but I used a bleach solution.  Nothing would go.  I took a deep breath and called NxStage.  I got a really sweet support rep (I was also on my best behavior), we talked about what I saw.  A flood in the back of the unit (internal) where the pure pak would be.  I told him about my thoughts that the drain may be occluded in the Control Unit.  He agreed, I pulled out the drawer, and there was flood in the back of the empty drawer.  He told me that it must be control unit #2.  So, he is sending me Control Unit #3 to be here on Tuesday, along with a spare pak.  I'll use bags and a manual drain line until then.  (I have no Dialysis on Monday, and I am being taken out  - a sympathy date - but I'll take anything I can get!)  Tuesday, all being well, I'll replace the Control Unit, and hopefully this will all have been a learning experience - relegated to the past.

I know that it is cliche, "when it rains it pours", but in the end, it will all work out.  All in all - it is STILL better than dialyzing incenter!  (and that is saying a lot)  When I was on the phone tonight during my run, after giving her a play-by-play, one of my oldest friends reminded me that I sounded great, and she also reminded me of my temperament when my BUN and Creatinine were really high.  I am used to living my life on fast forward, pushing extremes.  CKD slowed me down, but NxStage has given me some of my "gumption" back.  Because I am well dialyzed (and I've had my iron infusions), I had the energy to handle this week long situation and work full time.  A year ago right now, I would have crawled into bed and stayed there until it all went away.  So, I tend to look at this as a test.  And I think that I passed.  (I maybe lose marks for the fight with the customer service rep)  But all in all I survived.

I'll post when Control Unit #3 is installed and working.

I can't remember does the drain line go through the control unit? It's been over a year since I had a PureFlow.

[jbeany]

Yes, it does.  Technically, you should be able to drain bags thru the Pureflow, even if it isn't on.  I've done it.

[Bill Peckham]

Yes, it does.  Technically, you should be able to drain bags thru the Pureflow, even if it isn't on.  I've done it.

So when you replace the Control Unit you re also replacing the waste pathway?

[Meinuk]

Here is a photo of Control Unit # 1 waiting to be boxed up an sent back to NxStage.

The waste is on the top left of the front of the Control Panel.

[Bill Peckham]

Thanks Anna - still I think using the disposable drain lines makes sense to me. The longer you have a control unit the more likely it becomes that there will be a clog in the waste pathway.

[jbeany]

Are you flushing the drain line with the bleach and water solution once a month or more?  I find that helps as well.

[Meinuk]

Monday Night -

So, I was thinking about what Bill said about drain lines.  And I realized that my neighbor (who controls the thermostat) has had my apt over 90 degrees for the past week.  Before I started my run tonight (my nurse made me add a run to make up for low volume)  I tapped the length of the black drain line, (pretty aggressively to dislodge any crystals that may have formed) then I flushed with a bleach solution for 29 mins.  So far so good.  Tonight I may try priming my last pak.  If this works - -and I don't have to change another Control Unit, then I will be a very happy girl!  (BP - we'll discuss your fee)

[Meinuk]

Later Monday night.  I was thrilled that my 20L run worked after I shook & flushed the black drain line (I was actually quite pleased with myself).  So, I was daring and tried to prime a pak.  Whoo Hoo - As I tidied up after my run, the pack was priming away.  I started to get ready for bed, and that old familiar beep started again.  Pump error.  Sigh...  I guess that is is the Control Unit after all.

That which does not kill you will only make you stronger.....That which does not kill you will only make you stronger.....That which does not kill you will only make you stronger.....That which does not kill you will only make you stronger.....

At least I can say that I tried.

[Meinuk]

Tuesday PM - The saga continues....

I got home to see that UPS did not deliver the Control Unit.  The note said that someone over 21 had to be home to sign for it.  WTF?!?  I had discussed this with the NxStage rep, and I was assured that just like Replacement #1, Replacement #2 would be dropped off.  I called NxStage.  They said it was UPS, and there was nothing that they could do about it.  I called UPS.  Have yet to hear from them.  Did I mention that I only have two days supply left of bags (including tonight), and my next -earliest - -delivery of bags is next Monday?  (I don't want to hear about stockpiling, I had a weeks worth of emergency supplies - it's just that this problem has been over a week ongoing.)

If this weren't so serious, it would be friggin hilarious.

BTW - I got my "Welcome to NxStage" Packet yesterday.....

[willieandwinnie]

Meinuk, can you go to your clinic and get some supplies from them? Can't NxStage overnight stuff to you? This is an absolutely hideous way to be treated. I would be so pissed. 

[Meinuk]

NxStage tech support is authorized to "Expedite" bag delivery so that I will have some for the weekend....  But will UPS deliver them???

The past eight days has just been an example of how things can snowball. All because of a power surge last Monday.  Things will work out, they just won't be stress free...

[jbeany]

BTW - I got my "Welcome to NxStage" Packet yesterday.....

Nice!

[Meinuk]

Just after midnight April 2nd.

After six calls to UPS - the Control Unit is delivered at 8:30 PM.  I asked the driver why it wasn't dropped off, he showed me that it was shipped signature required.  He even showed me where on the label the words "Driver Release" would have been printed if it had been requested.  But that is a rant for another day.  I am exhausted, angry and totally shocked that yet again, I've been foiled.

But wait - there's more! After my uneventful 20L run, I taped up, hauled over the box and installed the unit.  No problem - just some heavy lifting.  I then started to prime the pak, and it was exhausted.  I shot myself in the foot by using my last pack.  (for those of you keeping count, that'll be four packs in eight days. And to think that I complained that I had too many...)

I called NxStage.  After being asked if I would like to take a survey, then being told that I was first in line for my call, I was sent to the Answering Service.  (NxStage, are you reading this?  Maybe when a customer first dials for HELP, you shouldn't waste their time asking them to take a survey) Ya think?

I spoke clearly with the rep.  (no fights tonight, (maybe a little RANT)  He assured me that they would be sending me bag and a pure pack over night, no signature required.  I laughed and told him that is what the very nice rep that I spoke with on Sunday said - Now I would like it in writing and the tracking number as well.

I reminded the rep that the debilitating park of CKD/dialysis is supposed to be the sickness, not the administration of supplies - or the filling out of a UPS shipping label.  I need to qualify something, I do what I am told.  If a delivery is attended, I am here, if it is no signature required, I plan my life accordingly.  I  really am a low maintenance person.  (no joke)

Franklin was on to something:

For want of a nail the shoe was lost.
For want of a shoe the horse was lost.
For want of a horse the rider was lost.
For want of a rider the battle was lost.
For want of a battle the kingdom was lost.
And all for the want of a horseshoe nail.