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Author Topic: Am I over reacting?  (Read 4410 times)
pagandialysis
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« on: January 03, 2014, 02:20:16 PM »

So the people at the front desk of the dialysis clinic always talk to me and ask me what's new.

I told them that I had found out that I have been over paying for my Bourbon. The place I had been going to was charging me $34.99 but this little place I had found only charges $26.95.

So now I've gotten lectured by four different people in the first thirty minutes of treatment, not one of them was the dietitian.

The dietitian has known since March, when I moved here, that I average 2 oz either a week or every other week and she's fine with it.

Should I be as upset as I am? I mean come on I'm not guzzling it down, it takes me two months to go through a bottle.

Just because I'm on dialysis doesn't mean I should avoid alcohol entirely.

I'm just angry because they gave me an intervention without knowing anything about my drinking habits.

 :rant;
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Dining on Dialysis - www.diningondialysis.com
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Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
Joe
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« Reply #1 on: January 03, 2014, 03:54:59 PM »

I think I would have jacked them up on it pd. They don't know what your drinking habits are, your dietician does, and you dietician is fine with what you are doing. So lighten the heck up and go climb somebody else's tree.
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Jean
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« Reply #2 on: January 03, 2014, 05:57:31 PM »

I think you should take this as far as you can and have some fun with it, UNLESS you are waiting for a transplant, because they might figure you are non-compliant. If not, you could reaaaaly give these people some things to think about. But then, for me, most of the time I no longer care what people think of me. If you do care, then let your dietician talk to them, or do it yourself. If she thinks its okay, then its okay.
The amount you are " guzzling " is ridiculously small.
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One day at a time, thats all I can do.
Angiepkd
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« Reply #3 on: January 03, 2014, 07:23:37 PM »

I am not sure I could resist having some fun with these idiots. We lose a lot with this dreaded dialysis, but a sense of humor shouldn't have to be checked at the door.  I would give them a different liquor and price every time you go in.  See if they catch on. Of course, being labeled as non-compliant would be awful, so choose wisely.  If you are waiting for a transplant, the safer route would be having the dietician talk to them.  Why do people have to be such jerks?   :Kit n Stik;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
galvo
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« Reply #4 on: January 03, 2014, 08:16:02 PM »

Tell 'em to get stuffed!
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Galvo
obsidianom
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« Reply #5 on: January 04, 2014, 04:26:52 AM »

Tell them as cold as it is this winter you drink anti-freeze to keep warm on dialysis. Then ask them to figure out how much they can dialyze off with their machines. With a VERY straight face ask them how much anti freeze is permissible.  :bandance;
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Dman73
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« Reply #6 on: January 04, 2014, 06:14:24 AM »

The people at my center's front desk can't be seen because they hide behind these miniature mini blinds.

If I could see them and they were interested as to what was going on I might say that the cost of my Prozac went up or better yet my Walmart is out of 12 ga shells and note their reaction.
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noahvale
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« Reply #7 on: January 04, 2014, 08:03:03 AM »

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« Last Edit: September 19, 2015, 03:04:05 PM by noahvale » Logged
MooseMom
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« Reply #8 on: January 04, 2014, 09:24:43 AM »

Honestly?  Yes, I do think you are overreacting.  There are bigger battles to fight.  It might be an idea to say something along the lines of "Thanks so much for your concern, but I've had this discussion with the dietician."

I have to agree with noahvale.

It's true that they lectured you without being aware of the facts.  Ignore them.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Wildrose
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« Reply #9 on: January 08, 2014, 12:51:09 AM »

What noahvale said might sound a little harsh but its so true. It is so easy to forget sometimes that the people at the dialysis centers are *not* our friends and everything we say and do is getting recorded. We have to be very very careful, and unfortunatly if you upset the wrong person your health can be in jeopardy (if you are labeled as non-compliant).
My opinion would be to not share about your drinking habits. :)

Good luck!
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1995 - Diagnosed with 'some kind' of kidney disease during first pregnancy at 16 yrs old due to excess protein in urine
1998 - Biopsy diagnosis of IGA Nephropathy at age 18
2007 - Successful second pregnancy, creatnine of 1.8 something
2009 - Successful third pregnancy creatnine of 2 something
2009-November of 2011 - Somehow went from Creatnine of 2 something to 5.43
November 2011 - Diagnosed with End Stage Renal Disease
3/28/12 - Started Peritoneal Dialysis
5/21/12 - Ended up in hospital for 5 days with PD fluid leaking through hole in diaphragm to right lung
5/25/12 - IJ catheter placed, 5/26/12 - First in center hemo treatment
6/15/12 - Back on PD for three weeks and hemo at same time, 7/7/12 - PD fluid leaked again, off PD and still on hemo, 7/15/12 - on PD again and hemo
7/23/12 - chest xray shows fluid leak again, off PD for one month with possible thoracic surgery in future to fix hole in diaphragm. 5.70 creatnine
8/7/12 - 24 hr urine test shows improved kidney function. 3.47 creatnine - Dr reduced hemodialysis from 3x's to 2xs a week.
BattleScars
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« Reply #10 on: January 08, 2014, 04:34:13 AM »

This is my single biggest complaint with the medical community. I'm a man in my late 30's and but since my kidney failure I feel like I get treated like a child. The diet part I sort of understand if my numbers are bad but I can't stand getting scolded for what I eat or being treated like a child about it. I had the same thing happen to me when I admitted I have a beer every now and then. They started asking me all kinds of questions like I was an alcoholic. I could maybe understand if I had liver failure or something but this is ridiculous. Even when I told them I drink maybe once a month I still got treated like I needed to go to AA. I would say it's a safe bet that if you are going through the transplant process don't even bother mentioning alcohol at all. It can only complicate things. I now prefer just to keep it to myself so I don't have to be scolded like I'm 16 years old again. Last time I checked the drinking age here in the US is 21. I don't smoke weed but have considered smoking a little to help my sleeping problems but I would hate to think how I would be treated of they found that out! 
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cdwbrooklyn
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« Reply #11 on: January 08, 2014, 08:24:49 AM »

My take is if you don’t want them to say something to you, don’t tell them your business.  When I was in center, I was a very private person.  If someone asked me a question that was personal, I will simply say it is personal.  After a while, they did not ask me no quesitons and of course my result was always good.  However, I use to  kid around with the dietian.  I would tell her that I’m eating all the wrong foods and watched her reaction.  She would try to tell me not to eat it and I would laugh and tell her it not going to happen I’m addicted .  Then, I would tell her that I get  drunk every night and then she would know I’m joking and walk always.  Boy that was fun.   :rofl; :clap;

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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
Alex C.
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« Reply #12 on: January 08, 2014, 08:38:54 AM »

Always be careful about the info you give to medical people, because the way they put it down may be misconstrued later!
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cdwbrooklyn
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« Reply #13 on: January 08, 2014, 12:10:26 PM »

Always be careful about the info you give to medical people, because the way they put it down may be misconstrued later!

Alex, you’re right…but I didn’t care because I was already taking off the transplant list due to damage veins.  So I basically said what I wanted to say.  However, I was very happy to leave and do NxStage because I was under the impression that I will be there for the rest of my life so why not have fun.  As long as my results were good, what can they say?  But you’re right for anyone who’s on the transplant list because they will find everything to use against you as if you are taking their kidney.  :urcrazy;


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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
Wat76
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« Reply #14 on: January 08, 2014, 12:25:45 PM »

They sure do, I was surprised to look at my chart one day and saw something I said as a joke to one of the techs was discussed in their team meeting.  I asked the tech, why did she do that and she told me they report EVERYTHING, I bet that taught me a lesson.  They take what you say at heart.

Deb
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obsidianom
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« Reply #15 on: January 09, 2014, 09:26:21 AM »

Always be careful about the info you give to medical people, because the way they put it down may be misconstrued later!

Alex, you’re right…but I didn’t care because I was already taking off the transplant list due to damage veins.  So I basically said what I wanted to say.  However, I was very happy to leave and do NxStage because I was under the impression that I will be there for the rest of my life so why not have fun.  As long as my results were good, what can they say?  But you’re right for anyone who’s on the transplant list because they will find everything to use against you as if you are taking their kidney.  :urcrazy;
I agree completely with you on the whole transplant issue. Those people are often vile nasty disrespectful people. My wife and I had such a bad experience with our local transplant group that we decided to stay on Nxstage for life. They came right out and stated that "we are the guardians of the kidneys" . I wrote them quite a letter about our experience there and got a call from the lead doctor and an apology . However my wife and I would not put her life in their hands and would not want to be dealing with them for years. Transplants involve so much time with these idiots that we decided we prefer dialysis at home.
I am a physician and even that didnt seem to change the bad behavior by the transplant idiots. In fact I think that made them even more agressive toward me to try and control their turf.
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My wife is the most important person in my life. Dialysis is an honor to do for her.
NxStage since June 2012 .
When not doing dialysis I am a physician ,for over 25 years now(not a nephrologist)

Any posting here should be used for informational purposes only . Talk to your own doctor about treatment decisions.
Simon Dog
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« Reply #16 on: January 09, 2014, 12:01:38 PM »

better yet my Walmart is out of 12 ga shells and note their reaction.
This would be a legitimate problem for some of us, however, the ammo shortage seems to be confined mostly to center fire handgun and assault rifle calibers.
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Deanne
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« Reply #17 on: January 09, 2014, 01:53:09 PM »

Think about your conversation as if you were on the other side of it - as if someone told you that he's been paying too much for bourban. If someone talked to me about alcohol prices, I'd probably think that person drank to excess, too. My thought process is that I buy so alcohol so infrequently that I wouldn't remember the price from one store to the next, so someone who knows this much about the price must buy a lot of it. Being in the medical industry, it makes sense that they'd give a few lectures about it, just like if I started quoting prices on pizza at various restaurants, they'd probably think I was chowing down on pizza regularly.

At the same time, I've learned to have very thick skin. I work in a place where being blunt is encouraged, and if you make a comment that someone calls you on, it's your fault for making the comment in the first place. I learned not to take things personally. If someone criticizes my actions, I listen to the part of the criticism that makes sense and let the rest go.
« Last Edit: January 09, 2014, 01:54:32 PM by Deanne » Logged

Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
CalamityEC
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« Reply #18 on: January 10, 2014, 09:43:35 AM »

I'm really happy my dietitian, nurses, and doctors all talk to each other.  I think having a little fun is totally fine.  But, remember, they are trying to help.  So, cut them some slack, maybe?  Your dietitian knows.  Maybe give him/her a head's up about the "intervention" and see what he/she thinks.

On a slightly different note, I've also come to realize who can and can't take jokes in my dialysis unit.  So maybe use discretion in that regard as well?
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

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« Reply #19 on: January 16, 2014, 09:44:18 AM »

Be very careful WHAT you tell these places because just the wrong words and they will say you are NON Compliant and that will get you taken off the transplant list if you are on.  They document EVERY word spoken!
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Inherited PKD from my Mother who died at age 52
2001 Transplant - Blessed...only on list for 4 days
2012 Lost Transplant and had Pneumonia
2012 June - started Dialysis
2012 December -  Back on Transplant list
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« Reply #20 on: January 19, 2014, 06:18:11 AM »

No ... I'm with you on this.
I'm feeling very anti dialysis centre staff at the moment anyway but...
They always seem to "have a go" at me for things beyond my control.
It really really annoys me  :boxing;

Some days I just want to punch them out.
"Try swapping places for a week"

Hang in there and ENJOY that Bourbon. If it feels good do it.  :cuddle;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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