Wednesday, December 28, 2016

It's Such a Small Request ...

So ... one of the hardest things about dialysis (and let me assure you that it's difficult to narrow a discussion down to "one" thing) ... is that you are tied to a treatment schedule that is practically chiseled in stone.  I'm not sure how it is in other centers, because I've only to be one so far, but there is little to no flexibility.  Oh, my center will tell you that they will work with you ... but when you actually request a change, they hem and haw and ultimately say no.

Now some aspects of this I understand.  My schedule is Monday, Wednesday and Friday.  Let's say I complete my Friday treatment ... and ask to change Monday to Tuesday.  Well, that's three days.  I suppose if I wanted to go to St. Louis for a long weekend, I could demand to skip three days.  But for the normal, everyday kind of things ... I get it.   I don't ask for a three day break.

But let's say it's something special like someone's birthday.   And I ask ... days in advance ... to switch to a schedule that's Monday, Thursday, and Saturday.  That's no more than a two day break ... and yes it is a change ... but ultimately ... I'm told no.  

Then I request ... instead of starting at four thirty, could I please have a special start time at noon ... or even one o'clock.   I will take a half day off work ... just to make sure I'm home in the evening.  Again, I'm told they will "work with me" ... and the day before, they call to say there is only one opening and it's at 9:30 a.m.  So basically I'd have to take the whole day off ... which is kind of hard these days with all my sick time and medical issues.  So once again ... ultimately ... no.

Right now you're thinking ... can't you just "call in sick" to dialysis ... and just not goThe simple answer, I suppose, is yes.  Although it's a black mark against you.  If you don't want to get on the transplant team, that is perfectly fine.  There is literally no repercussion if you aren't on the transplant list and you don't want a treatment.  People call off all the time.  But if you do want a transplant?  You better take every pill ... and you better be sitting there five minutes before your treatment every. single. goddamn. time.  The transplant team is watching.  That's not paranoia ... it's just the way the organ transplant program works.

So to make a long post just a little shorter ... I'm disgusted.  

I'm frustrated and downhearted and disgusted.

I'm already having issues because it becomes more and more depressing ... soul crushingly depressing ... to force myself to go to a treatment that may or may not be a painful horror show.  Some treatments are fine.  Other than being boring, some treatments are literally nothing but sitting there not moving for three and a half hours.  Other treatments ... you have cramps so bad that your leg muscles ache for days ... you throw up so much that your stomach muscles are raw ... you sit there dizzy with a pounding head ache.

It's a fucking three-night-a-week shit show ... and so to deny a patient that one aspect ... the ability to flex a little ... the ability to say, "Hey, I want to spend someone's birthday with them ... can I please have my treatment tomorrow night?"  To be denied that is enough to make you want to cry.

I don't have an answer.  Are other centers better?  I don't know.  Mine is short staffed ... I know the nurses aren't happy with the long hours and the staffing situation.  I'm on a "better" side of town ... so you would think we would have a nice facility but it's nothing to write home about.   Or maybe it is?  Maybe I would go to another center and marvel at how great I have it.   I just don't know. 

But I can tell you that I'm going to end up in therapy if I have to spend the rest of my life missing every birthday, family dinner, and work gathering.  And therapy?  Would just mean more time away from home.

I'm done bitching ... at least for today.

If you woke up
On the wrong side of the bed
Count on me.
If you're feeling that freight train
Running through your head
Count on me.
If you just need a friend to talk to,
or maybe not talk at all.

I will bring you buckets of mercy,
and put a smile back on your pretty face
I'll bring a shovel if you want it.
Carry your secrets to the grave 

Drive By Truckers - Mercy Buckets

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