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Author Topic: Extremely frustrated and P!SSED!!!!  (Read 7983 times)
KarenInWA
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« on: March 10, 2011, 03:13:22 AM »

Hello everyone,

I am still, for right now, pre-D.  Hoping to be that way for as long as possible, but thinking that due to how much my kidneys hate me, that this will not last throughout the end of the year.  I work FT in a call center setting, where my job is to take incoming calls from field techs and other personnel and work on trouble tickets for DSL for a major rural phone company here in the US.  We also have offline work to do in our "ticket buckets" that tend to get ignored because upper management will not let us hire more people (probably would cut into their yearly bonus).  I feel very blessed to have this job as it pays really well, is a union position, and has incredible medical benefits.  However, it is not without drama.

Right now, I am working M-F 7a-4p.  LOVE it!!!  Not too early, not too late (shifts range from 5a-2p to 9a-6p).  I was working this shift before, then they forced me to work 9-6 somewhere around Thanksgiving.  Wasn't too happy about that, but then I figured "hell, it's winter, what do I care?" and went with it.  In January, I had to do "appointment time" so I could get medical testing done for the kidney list.  One week, I only worked 9-6 on Monday due to that.  I worked 6-3 on 2 other days, a spit shift on another, and 8-5 so I could get another K reading for my epo shot (stupid K....)  Fast fwd to the following week or 2, and I had to do another appt, the last one I needed to do to "get on the list'.  I needed a breast biopsy to prove being cancer-free.  I needed to work 5-noon, then make up the other 2 hours on another day.  They made me swap shifts because suddenly, this was a "shift change" since it was over 2 hours difference from my start and/or end time.  Thankfully, one of my co-workers stepped up, but I was flabbergasted!  I told my supervisor that I need to go on dr's appts like this on a *regular basis* and being that I will be on D soon, I didn't want to use Personal Time for dr's appts.  I am healthy enough to make up the time like I always was doing, why is there a need to change it? 

Okay, trying to make a long story short... They recently asked me to work 7-4 for 2 weeks, due to the call volume being crazy before 9am.  NO problem!!! Glad to do it!!! This ends this Friday.  During that time, they had us bid for shifts.  The only M-F shifts available are 5-2, 9-6, and 2 shifts that are around 6-3.  I bid for those, but they went to higher seniority.  i worked something out w/a co-worker to trade hours on his weekdays, M, T, W. He's not a morning person, I don't want to work late.  Perfect, right? WRONG!!! They won't let us do a permanent shift swap, citing the union contract. I then was told to try to make dr's appts in the am, betw 7-9, when I told the scheduling guy about my reality.  I don't want to work until 6 because my medical issues are only going to get worse from here, and I'll need to go to the dr more often!!!!  (I don't want to work from 5-2 because I'm just not wired to come in that early on a consistent basis.  Once in a while - yes. Besides, I had worked out a trade that they're being buggars about).  The scheduling guy told me to contact the EAP program so I can see a counselor about my "life issues" - being that I have a crap-ass, terminal disease, need to see the dr, and have a job that won't budge on the schedule!!!!  Yes, I know I need to file an fmla, but here's the thing.  I don't want to waste fmla hours on medical appointments I can *more than make up* when I need to save that time for when the shit really hits the fan.  There is a limit to how many hours one can use and still be protected.  I can't believe the absolute uncaring POS's I have to deal with at work.  I have called the union, and they want to get involved.  The lack of humanity is outstanding. :(

Sorry for the long post.  I never had a problem with this before until "they" decided to get this one scheduling group to head all our scheduling.  As a result, my smallish dept is now mostly pissed as a result of this shift bid, and morale of an already over-worked group is going to go down.  I look at my job as my lifeline, since it affords me my lifestyle and gives me the medical benefits I need.  My question to you all is, what would YOU do???

Thank you,

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
okarol
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« Reply #1 on: March 10, 2011, 11:38:52 AM »


I would find out all my options because once you start dialysis, it can be worse. Not only can you NOT pick your hours at work, but you also probably will NOT be given your choice of shifts if you do in-center dialysis. Any chance you can get a preemptive transplant and avoid dialysis?
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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
KarenInWA
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« Reply #2 on: March 10, 2011, 12:59:46 PM »


I would find out all my options because once you start dialysis, it can be worse. Not only can you NOT pick your hours at work, but you also probably will NOT be given your choice of shifts if you do in-center dialysis. Any chance you can get a preemptive transplant and avoid dialysis?

Karol - I am trying to do just that.  So far, a neighbor friend has offered to get tested.  If she is healthy enough and not a match, the UW is part of the NKR, so hopefully that will work out if needed!

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
okarol
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« Reply #3 on: March 14, 2011, 12:59:01 PM »

 :2thumbsup; Here's hoping for the best!  :-*
Logged


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
Bill Peckham
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« Reply #4 on: March 14, 2011, 07:58:30 PM »

I think the American's with Disabilities Act trumps any union agreement. I'm not an ADA expert at all but my understanding is after a number of court decisions the ADA requires employers to offer "reasonable accommodation". What exactly "reasonable accommodation" means is why there are so many lawyers but my understanding is that providing the ability to make routine, regular Dr. appointments is fully covered under the ADA. Given you are a happy employee who likes her job, has union back up and you are willing and able to be as productive as ever, I'm surprised that you're getting grief instead of support. I'd assume that this is a case of a misguided supervisor assuming all excuses are equal ... you have the ADA trump card but give people the opportunity to do the right thing by bringing them up to date.


When I worked on the show floor and dialyzed incenter there were many nights a crew was asked to "volunteer" for OT to get a show in, I'd just say I'd love to stay but I'll die and then the foreman would say Alright anyone who won't die should volunteer. They expect excuses, ours happen to be true.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
KarenInWA
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« Reply #5 on: March 16, 2011, 11:07:38 AM »

Thank you for your input, Bill!

The union guy came to meet with me at work yesterday.  I guess in order to get ADA protection, I have to get my dr and Prudential (the co who takes care of our fmla and STD needs) involved.  Apparently, my word about what I need does not carry enough weight.  I will be pursuing this, and I am still in disbelief that I am being treated this way.  I have near perfect attendance (last time I called in sick was April 1st) and I haven't been late in well over a year, maybe even more (I lose track!).  I have heard of other departments giving grief over fmla and related things, but I never thought it would happen to me.  Yay.

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
lmunchkin
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"There Is No Place Like Home!"

« Reply #6 on: March 24, 2011, 11:21:19 AM »

Any updates, KarenInWa?  All of this can be a bit overwhelming, Im sure.  Just was wondering if you have heard anything more! :sos;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
KarenInWA
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« Reply #7 on: March 26, 2011, 10:27:38 AM »

Yes, I have somewhat of an update.  I have decided to not keep my condition secret at work.  I figure, why not? It's not like it's something to be ashamed of, and maybe I can educate some people by being open about it.  What if someone at work, or someone in their lives become diagnosed and need someone to talk to?  We all know how alone it can be having this disease, so why deal with it alone if you don't have to?  That said, I still haven't sat down and talked to my direct supervisor or head of department about this, either.  They both know this is happening, but I have yet to discuss the scheduling issues I have.  I'm afraid of getting angry at them.

For now, I have an fmla for intermittent leave, a letter for my dr stating to let me make up time for various appointments, and the labor person in HR is in the loop over what my future needs will most likely be.  The union is involved, as well.  I have made arrangements with a few co-workers to swap hours on days when I need to.  It is very important to me that I keep my job through all of this.  I like working.  I know working FT and being on D won't be easy.  But I am ready to give it a try when the time comes.  And the time is coming soon.

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
MooseMom
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« Reply #8 on: March 26, 2011, 01:46:59 PM »

Karen, you probably already know this, but originally back in the 1970's, the whole reason ESRD/dialysis was given special payment consideration under Medicare was so that patients COULD go back to work!!  The idea was that the expense of dialysis would be offset by taxes paid by patients' income once they returned to employment.  So, there should not be any resistance to you working...that's the original goal!  Tell your boss that.  Give him/her a bit of a history lesson.

The whole reason most people don't go back to work is because their dialysis leaves them disabled.  But you are too smart to let that happen to you. 

As for telling your co-workers, I'm sure they'll be sympathetic, but then they're going to go back to their own lives.  Karen, they're not going to care that much.  Keeping such a secret just puts more of a burden on your shoulders, and you should be trying to make life EASIER for yourself, not harder!  Also like you've pointed out, maybe after hearing your story, a co-worker might go get him/herself checked out and discover s/he has CKD 3 and can start treatment NOW!  You could save a life, Karen, you really could, just by telling people your story.  And you never know...there may be someone out there who has a spare kidney they could let you have.

I think if your co-workers see that you are making a real effort to keep working, that you are trying your best to be accomodating, they'll cut you some slack.  There's always gonna be some sadsack that's gonna whine about you getting 'special treatment", but you can't do much about those trolls.  Working and D won't be easy, like you've said, but it IS doable as long as you are getting good dialysis.  That's the key...good dialysis so that you can remain in the workforce as originally intended.
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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."
onestronglittlelady
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« Reply #9 on: March 30, 2011, 05:57:07 PM »

When I went on dialysis, my union job would not work around my dialysis schedule. They also said I was a medical risk due to the Catheter. My Teamsters Union said there was nothing they could do for me. I am getting my short term disability. I hope your situation fairs better. You also need to know if you are told you can't work there due to scheduling, how long under the union contract your employer must pay into into your insurance. Good luck and hugs to you!
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #10 on: March 31, 2011, 11:28:50 PM »

I am with onestronglittlelady....my union did nothing to help me but write my resignation letter! What ass hats!

Good luck Karen...love the "can do and will do" attitude!
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
KarenInWA
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« Reply #11 on: April 14, 2011, 10:38:09 PM »

Update on my Work Situation!!!

I had a meeting with both my supervisor and the labor relations person in the HR department. They are going to work with me!!!!  I will be working a normal shift of M-F from 7am-4pm, which will allow me to get off early enough to do needed lab appts, etc, and should accomodate dialysis once I start that, which I am now coming to the realization will be sooner rather than later.  I'm not happy about that bit of reality, but I have accepted it. They will be treating me as a "special case", as in, no disciplinary actions will be taken against me for time missed related to my disease.  They will work with me as issues arise, and do what they can so I can balance working FT and take care of my health also.  This is all being handled with management, HR, and the union.

 :2thumbsup;

KarenInWA
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
YLGuy
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« Reply #12 on: April 14, 2011, 11:12:59 PM »

 :clap;  :thumbup;
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Chris
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« Reply #13 on: April 14, 2011, 11:35:00 PM »

 :thumbup; :clap;
Glad to hear Karen, I'm sure you will manage fine when you start and adjust to D if you do not get a pre-emptive transplant first.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
galvo
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« Reply #14 on: April 15, 2011, 12:33:16 AM »

Good news.
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Galvo
MooseMom
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« Reply #15 on: April 15, 2011, 12:42:40 AM »

Oh Karen, I am so glad to hear this.  I was really angry and frustrated on your behalf, and I it restores my faith in mankind to hear that everyone is going to work with you to make sure that you can do what you need to do.  I'm thrilled to bits for you!!
Logged

"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."
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #16 on: April 17, 2011, 07:40:36 PM »

Glad to hear this Karen!!! Good luck!
xo,
R
Logged

Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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