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| | | |-+  Some of you need to get a freakin' clue (R A N T)
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Author Topic: Some of you need to get a freakin' clue (R A N T)  (Read 5228 times)
sickofbeingsick
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« on: August 09, 2008, 04:56:58 PM »

There are some days when going to your treatment at the clinic is more than you can stand. I wasn't my usual peppy self one day and the D.O.N. walks up to me asks "what's wrong"? I tell her "I really don't want to be here today" to which she replied "Yeah, I know what you mean--I don't wanna be here either." WTF?! I tell her  "Yeah you know exactly how I feel 'cause it's the same thing, right"?  Let's compare experiences, shall we? I go to the clinic and have to look forward to painful needle sticks, nausea, headache, cramping, and the blood pressure rollercoaster ride. She gets to park her  ass behind a desk and do paperwork. Wow--she really DOES get it! :2thumbsup;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: August 09, 2008, 05:03:48 PM »



AND she gets paid! And can quit if she wants. Yep, she gets it.  :sarcasm;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
kellyt
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« Reply #2 on: August 09, 2008, 05:12:37 PM »

I'm so sorry you're going through this, Sick.  I hope you can find a "happy place" to go to in your mind.  I went on a cruise in June and did the dolphin swim in Cozumel.  That's going to be my "happy place" whenever I start.  I hope it's enough!  I can usually put up a good front around people, but I'm the Master at planning a personal pitty party!

Let it all out, girl!  We're here to listen and hopefully help!
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
RichardMEL
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« Reply #3 on: August 10, 2008, 06:40:54 AM »

lol kelly I love that happy place in my mind... it's full of nubile young ladies and.... uh.... well....  >:D .... but then my blood pressure goes up and it's no good :(

Yeah SOBS when staff complain about being there I do think "a bit of perspective please..." but then I whinge sometimes at my own job so... horses for courses I guess....

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
kellyt
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« Reply #4 on: August 10, 2008, 01:02:06 PM »

Can you request to NOT have a certain tech or individual deal with you when your at the clinic?  Or are you "stuck" with whoever is available and working?    Get it?  "Stuck"...   :P
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Robby712
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« Reply #5 on: August 10, 2008, 01:18:24 PM »

lol, more than once my techs or nurses have implied that I'm lucky b/c I'm only there 4 hours at a time...they have to work 12 hour shifts.  Sometimes longer!

Uhhh...okay, three-four 12 hour shifts a week versus a 40 hour workweek AND spending 12 hours a week actually ON dialysis on top of that.  Pick one.

Clueless is right.
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monrein
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Might as well smile

« Reply #6 on: August 10, 2008, 03:32:11 PM »

I don't mean to defend the clueless and lord knows there are some mean medical people out there but sometimes these really silly things are said from a place of trying to find common ground.  Doesn't make it any less stupid but intent is important and if I feel that the person just doesn't know what to say then it's an opportunity to give them some necessary on-the-job training.  So in a situation like this, Sickofbeingsick, I might say something like "That's pretty funny,  I'd give my eyeteeth, my firstborn and all my savings to be able to be in your position instead of mine."  Or "Are you kidding me, just think about that for a minute, we're hardly in the same boat"  Or "Okay, I have an idea, let's mix it up tonight, you have a seat, I'll stick you and do your job and you can get to go home early.  Dialysis is a piece of cake really, you'll have no trouble getting used to it".  Or even "You know, when you say something like that, it really makes me feel that you have no idea how incredibly difficult this whole dialysis business is, physically, emotionally, financially, relationship-wise, travel-wise, food-wise and the list goes on.  I mean really (insert tech or nurse's name here) you might as well say to a cancer patient who feels upset about hair loss that you know what they're going through because when the humidity's high you never know what to do with your hair.  Now I'm really and truly in a bad funk."

Most people, even nurses, who have never been really ill simply cannot know what we feel or experience and as crazy as this might seem, I feel that it is my/our responsibility to educate them on all the big and little things that affect our care.  Words are important and if someone hurts me accidentally or ignorantly or whatever they need to know that they've added to my burden, not helped.  I knew nothing about dialysis when I had to go on it and I honestly think if I were a dialysis nurse I might have been misunderstood a number of times, especially at first. 

Of course, all that being said doesn't for a second change the fact that we get tired of educating, defending, repeating, explaining, eyeball rolling, double-checking and pushing back.  Thank goodness we can RANT.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
twirl
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« Reply #7 on: August 10, 2008, 03:37:37 PM »

 :flower; SOBS----- I love you  :flower;
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kitkatz
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« Reply #8 on: August 10, 2008, 04:25:44 PM »

You said it Monrein!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
cherpep
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« Reply #9 on: August 11, 2008, 10:57:58 AM »

You know, if I were healthy with 2 functioning kidneys, the last place I'd want to be is in a room where I have to take care of a bunch of crabby dialysis patients! LOL!  Strapping people to chairs and sticking them with needles, trying to keep them living, all the while listening to them crab about how they hate the place.  I'm telling you - the clinic is the last place you'd find me. 

:)
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Rerun
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Going through life tied to a chair!

« Reply #10 on: August 11, 2008, 11:11:15 AM »

I know what you mean Sick.  The staff has no idea how we feel.  I think part of on the job training is to set them in the chair for 4 hours with no TV (because sometimes ours is broken) no cell phone and something to give them cramps.

I don't know if I rather have them say "I know how you feel, I have to be here all day" or "Yeah, I wouldn't want to be you, your life is screwed, you live on a machine for awhile just to die anyway".  I guess I'd pick the former.
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paris
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« Reply #11 on: August 11, 2008, 11:18:15 AM »

And for some reason, when one is going through chemotherapy, everyone is shocked that the patient has to sit there for 3-4 hours to receive the treatment.   No one compares that the dialysis 3x a week that is never ending.     I know you shouldn't compare the two and I do have compassion for cancer patients--our family has been greatly affected by cancer.  Just my  :twocents;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
RichardMEL
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« Reply #12 on: August 11, 2008, 06:13:33 PM »

:flower; SOBS----- I love you  :flower;

hey!!! I'm jealous.... is there no room for me????? *pout*
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
twirl
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« Reply #13 on: August 12, 2008, 11:36:40 PM »

plenty of room for RichardMel :cheer: :cheer:
especially with Kitkatz putting her skirt back on------
 :cuddle; :waving; :cuddle;
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