just one more complaint...don't read if you're not in the mood :-)

[fearless]

I am at my wits end with my clinic.  And they're a good clinic!  After eight years on PD, where I was able to "compartmentalize" my disease, go to the clinic once a month, and hide in my own lovely life of fantasy and quiet good fun, now every aspect of my life and death struggle has people dragged into it every other day.  I have no privacy for my torment and I'm slapped in the face with my reality 3x a week.  And as if that's not enough, they keep p***ing things up and have got me frantic - feeling like I need to actually protect myself from their one-size-fits all profit-driven management decides without consultation and whatever we say goes BULL! Before they slowly but methodically KILL ME! AAAARRRRRGGGGGG!
God give me strength.  They will NOT win!  Isn't it awful to feel like a bunch of investors who are collecting their dividends are actually enjoying mint juleps at the expense of your flesh and blood, and the days of your life?

What I'm really hoping is you DON'T feel that way.  But right now I surely am my friends, and I just had to say it to somebody.  And there ain't nobody within earshot that's going to understand.  So there it is.  Goodnight!

[MooseMom]

 

I don't know what to day.  It must be such an overwhelming, frustrating experience that I don't even want to imagine it.  To have to go from home dialysis to incenter hemo...oh, it's criminal.  And to feel like all you are to them is a bag load of money...

I'm so sorry you are feeling this way; I'd feel exactly the same.  Is there any chance you can do hemo at home?  I'm sure someone has already asked you that.  Sorry!  But, could you?

[MooseMom]

Oh, SNAP!  I just saw a post from you on another thread where you wrote that you just got the OK for home hemo.  I really hope that will be your answer!  When can you start training?

[big777bill]

 Fearless I'm with you 100%. I started dialysis last Tuesday and I'm jaded already. I wanted to get into a center closer to my home and they did everything but backflips to get me to stay with them Such is life in the world of dialysis.

[amanda100wilson]

Fearless, since your experiences seem to be silmilar to me, and I kinda feel that we're kindred spirits, I REALLY do understand where you're coming from.  I know how frustrated that I felt when I had to go in-center prior to starting home HD.  It was so open-ended and they seemed pretty anti-home HD anyway, that I really thought at one stage that I had been sucked in there never to escape again, but here I am now, as I write this, sitting dialysing in the comfort of my own home, and you will to.  Hang in there, it won't be long now.

[Riverwhispering]

Fearless what did they do to you in the dialysis center that got you upset?  Details please

[fearless]

Gosh, thank you all for your sympathy, understanding and encouragement!  What a blessing.

Moose Mom, you are such a truly sweet person.

big777bill, I'm glad you've hooked into this site.  You will be able to strengthen your guard, which you shouldn't have to do, but, as you say "Such is life in the world of dialysis."  I wish you all the good health in the world.

Amanda,
Because I make such a fuss over things that the clinic thinks are insignificant (in their one-size-fits all philosophy) I think they will actually be relieved to send me home!  But I'm unable to express how important your example and encouragement has been to me.  I try to imagine how I would have gotten through these last few months without that lifeline, and, well, then I stop - because I don't really want to think about it!

Riverwhispering,
I didn't think i wanted to try to write about all this, but:
I'm experiencing a set-back in establishing buttonholes, and it's brought my frustration with the clinic to a head - because at every turn it seems to be THEIR policies and practices that work against me.  There have been four instances over the last 3 months where they've prevented me from doing what I believe, through my research, is best for me.  Some of the things are little (scrub off your scabs with an alcohol wipe instead of using a pick) others are big (management decided when I should first try a blunt instead of letting me and my tech decide - and this has damaged the track of my still-forming buttonhole enough so that I'm now scared we may have trashed it)  They also decided when I should go up a needle size, and that sent me back onto my catheter because I wasn't ready at the time.

Other things are: will not provide 3/5" needles even though they're recommended for fistula's like mine (still working on that, but have been told that even if it's approved it will be a year and a half before the needles are actually in the clinic - and i can't help but feel like that's a lie too)  Don't schedule enough nurses on the evening shift (which starts when I'm coming off my machine) to allow for problems (there are a couple old people who come off at the same time as me and I have to sit and wait because there's only two nurses and they have to be very attentive to the older folks - what if I alarm while one of them is holding someone's site?)  When they couldn't get the blunts in Friday, it was an hour before I got on my machine - and they kicked me off my machine an hour early! (because of short staffing)

I have checked out the other clinic in my town, and they do not provide the shorter needles either.  The fact that they are an unknown to me, whereas my 8 year experience with this clinic at least assures me that when I fight I get some response (eventually).  I'm just so tired of fighting!

One way or another, i will get on home hemo (there's another thing: they've told me I need to run at 350 before I can go to Nxstage - and i know that's not true!  So I asked "why" and the nurse just said it's because "you have to run at 350 for Nxstage".  So - now I need to talk to the doctor, because I know the "rule" is coming from above, and I've at least learned not to fight with the nurses because they are always on my side - they just can't say so, and they need to follow orders or they'll get fired (this I know for a fact)

The worst of it has been that I really don't think there's great concern for the preservation of a fistula that will be as long-lived as possible, and, as someone on hemodialysis that means: the longevity of my whole body. 

PEOPLE!  PROTECT YOUR FISTULAS!  You are not a part of the machine that you're hooked to.  Don't let yourself be treated like one - maintained for efficiency and ease of operation in stead of for your health!

[Riverwhispering]

Fearless thank you for detailing it.  I'm learning from this xoxox