Stressful dialysis

[mcclane]

This weekend has got to be the most stressful and anxiety filled dialysis I've ever had at home.  Mind you, up here in canada, we don't have use of the nxstage machines, the one I have is a bellco formula, and I've dubbed it 'the kia of dialysis' machines, because it is cheap, unreliable, and flimsy.

This occured thur. night, but I didn't think much of it.  On friday, I had to do bloodwork so I did my dialysis at the unit, so I never turned on my machine at home that whole day.  On sat when I turned it on, it did its thing - boot up sequence, self test (which takes 10 minute), and then rinse mode.  But I noticed that the rinse mode took close to 10 min, and then I got an error message saying something about the hydraulic.  So I just shut the machine down, turned it on again, and it did the same thing, error.  At this point I was getting a little frustrated.  It took close to 2 hours but the machine finally behaved enough to start dialysis.  When I was done, I put the machine on disinfect mode and left it.  I was surprised to hear the thing beep like crazy, it was the same error message, something about the hydraulic.

It book close to 45 min for the machine to finish its rinse mode before it started the disinfect cycle.  Sunday was worse, it kept producing that hydraulic error, it took over 2 hours before it behaved. 

So this morning I called the technician but he wasn't available.  I emailed him, left him a message on both his cell/office phone, still no response.  I finally then called the nurse and they were able to contact the technician.  An hour later, we confirmed a time of 5 pm tonite to have him fix the machine.

Man, I lost sleep due to the machine not working (worried about how i was going to do my next dialysis).  I did ask if (worse case senario) I could do a run at the unit, but they're booked up for the rest of the week.  That just drove up my stress level even more.

What a weekend.

[Whamo]

Wow, that does sound stressful.  Machines can be frustrating.  I hope the technician solves the problem and all goes well.

[MooseMom]

That's not a sufficient answer from your unit.  You shouldn't have to miss a dialysis session in case your machine goes on the blink, so your clinic needs to tell you what you should do if you can't get a mechanic in time.  Do you go to the ER?  What do you do?

[mcclane]

That's not a sufficient answer from your unit.  You shouldn't have to miss a dialysis session in case your machine goes on the blink, so your clinic needs to tell you what you should do if you can't get a mechanic in time.  Do you go to the ER?  What do you do?

you know, i never thought about that.  Luckily in this case, he was able to come out at noon and replaced the necessary part (it turns out it was the main computer, the part is around $2000).  Next time I see them, I'm going to ask them. 

[looneytunes]

Here in the US, if our NxStage cycler or the PureFlow unit goes down, the parts are shipped to us by priority shipping service and then we do the installation of new parts ourselves.  If hubby misses more than 2 sessions due to equipment problems, he is taken into the clinic to run on a priority basis. 

[Gerald Lively]

You are not me, so take this with a grain of salt.

If the home equipment failed me as you described, I would have immediately went to the dialysis Center and would have occupied the first empty chair, and dared them to take the risk of tossing me out and damaging my health.
This would have placed you in a position to negotiate for dialysis that very day.  Make 'em stay late, like you give a damn what their problems are.  No doubt you signed something early on that amounts to a contract for servies, meaning, they can't deny you service.

[mcclane]

From what i've read on this site, the nxstage appears to be quite user friendly.  The machine our unit has picked up is not user friendly at all.  I did crack open the case just to see what it looks like inside, and it is a plethora of chips, wiring, and hoses/tubes. 

Overall, I was happy that the technician was able to come by and fix the machine, but you guys have brought up a good point, what happens if it goes out again and it is a long weekend ?  what next ?  For sure now, the next time I go down to the unit I am going to ask about this. 

[del]

We are in Canada as well and my husband uses a fresenius machine at home.  We have never had any issues reaching a tech.  There is one on call 24/7.  In less than 10 mins we have always been able to talk to one.  Sometimes they have talked us through fixing the machine on our own and if that's not possible they are here the next day,
My husband would do the same as Gerald, head to the closest unit (over an hours drive away) and demand a session.  Once when the dialysis machine was broken he need a treatment at the unit.  When he called the head nurse told him they couldn't do the treatment and he would have to go to another unit which was over 2 hours away.  After a few not too nice words from hubby and threats to go to the media they made room for him that afternoon!! 

[Gerald Lively]

Sweetheart -
I believe your husband has his head screwed on right.  Hurrah for the people who get the job done.

Gerald

[amanda100wilson]

Strange, mybelief was that there is a Medicare requirement for units providing home HD to be able to provide in-unit dialysis for home patients when required?  I seem to recall that when I signed the 'contract' for home HD, that they specified that their part of the deal was to do so.

[KarenInWA]

Strange, mybelief was that there is a Medicare requirement for units providing home HD to be able to provide in-unit dialysis for home patients when required?  I seem to recall that when I signed the 'contract' for home HD, that they specified that their part of the deal was to do so.

Amanda, mcclane is in Canada. They may have different rules up there, and may vary by province.

KarenInWA

[Riki]

Strange, mybelief was that there is a Medicare requirement for units providing home HD to be able to provide in-unit dialysis for home patients when required?  I seem to recall that when I signed the 'contract' for home HD, that they specified that their part of the deal was to do so.

Amanda, mcclane is in Canada. They may have different rules up there, and may vary by province.

KarenInWA

I was trying to stay that earlier, but I was in dialysis and my phone wouldn't cooperate. *L*

[amanda100wilson]

Sorry, I didnt realise

[mcclane]

the home unit here will accomodate anyone doing home hemo at the unit as long as there is room, there is only 7 beds (i find if i book about a week in advance they'll take me in, no problem, last minute though maybe iffy - i've found they're getting awfully busy since i started home hemo, not a good sign). 

For example, on jan 26 i gotta go see my nephrologist.  I called early this week to book a time slot with my unit (I'm going to do run there before I see my neph, that way i don't have to do it at night) and they took me in no problem.

when my machine decided to take a dump, it was over the weekend and my home hemo unit is closed on the weekends.