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vanessa
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Life is so short live it to the fullest!!!
« on: May 28, 2011, 10:37:19 AM »
hello everyone i hope all of you are doing as well as can be expected. today i got on to facebooks I Hate Dialysis page and there i find some rude uncalled for post by Anna!! unbelievable i will whine if i choose to as will all of us she belittled the page as if we are all a bunch of ungrateful people who should just count our blessings and praise the lord for not having pain everyday all day as if our pain is minimal well guess what Anna we are in pain and dialysis is a huge pain in my daily life gosh i am so upset !!everyone on this website is amazing i have been so blessed to have been given the opportunity to ask questions that no one would know but all of you whom have been there and done this thing we call dialysis. do i have a right to be upset?  i know i am ranting on and on its just this does affect my life in so many ways as well as my kids and i feel like crap most of the time. i am glad Anna has found a way to praise and not whine however her judgment of me angered me because I HATE DIAYLSIS !!!
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vanessa!
PatDowns
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Celebrating 60th B'Day. 12/26/15
« Reply #1 on: May 28, 2011, 10:52:46 AM »
My thoughts are why do you feel like crap all the time, are you getting enough treatment and how well have you adjusted to the renal diet and med protocols?   
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Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
vanessa
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Life is so short live it to the fullest!!!
« Reply #2 on: May 28, 2011, 03:27:00 PM »
I think it had more to do with her attitude rather then how i feel i mean you have to read it i guess to understand it . if you would like to it is on facebook under the facebook page i hate dialysis
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vanessa!
greg10
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« Reply #3 on: May 28, 2011, 03:42:24 PM »
Quote from: vanessa on May 28, 2011, 03:27:00 PM
I think it had more to do with her attitude rather then how i feel i mean you have to read it i guess to understand it . if you would like to it is on facebook under the facebook page i hate dialysis
Don't let her get you down.  She doesn't know the mortality stats of first year ESRD patient going on dialysis.  She doesn't really know dialysis.

Anyone who posts on facebook can read people's real names, but it should stay on facebook.
Edited: Image removed - okarol/admin
« Last Edit: May 28, 2011, 04:58:14 PM by okarol » Logged
Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
kitkatz
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« Reply #4 on: May 28, 2011, 03:44:14 PM »
Remember anyone can say pretty much anything on Facebook and on Message Boards.  Her outlook is sunshine and roses.  Let her have it. It is one opinion.
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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
PatDowns
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Celebrating 60th B'Day. 12/26/15
« Reply #5 on: May 28, 2011, 03:49:56 PM »
Quote from: vanessa on May 28, 2011, 03:27:00 PM
I think it had more to do with her attitude rather then how i feel i mean you have to read it i guess to understand it . if you would like to it is on facebook under the facebook page i hate dialysis

Yes, I read what she wrote on Facebook.  Again, what YOU wrote bothers me.  Why do you feel like crap all the time?  Is it mentally and physically?  Are you getting good dialysis?  How is your BP?  Are your phos and K+ levels in line?  Are you getting EPO and/or iron supplementation?  All of us have bad days.  However, those of us getting quality dialysis care have more good days than bad. 
« Last Edit: May 28, 2011, 03:50:57 PM by PatDowns » Logged
Frank Moiger aka (previously) NoahVale and now PatDowns, the name originally chosen by a good dialysis mate who died in 12/2013.  I started in center hemodialysis as a 22 y.o. in 1978.  Cadaver transplant in 1990 and then back to in center hemodialysis in 2004 (nocturnal shift since 2011) after losing my transplant.  Former Associate  Director/Communications Director of the NKF of Georgia, President of the Atlanta Area AAKP Chapter, and consumer representative to ESRD Network 6.  Self-employed since 1993.

Dialysis prescription:
Sun-Tue-Thur - 6 hours per treatment
Dialysate flow (Qd) - 600 
Blood pump speed(Qb) - 315
Fresenius Optiflux200 NR filter - NO REUSE
Fresenius 2008 K2 dialysis machine
Chris
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WWW
« Reply #6 on: May 28, 2011, 04:37:26 PM »
Should we really be posting peoples facebook pages on here? We had a discussion about posting peoples names from facebook before and that was removed due to privacy concerns.
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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?
monrein
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Might as well smile
« Reply #7 on: May 28, 2011, 04:59:03 PM »
I agree with Chris that we ought not to be posting people's names here.  The post wasn't made here by the poster so I think we should leave things be.
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #8 on: May 28, 2011, 04:59:45 PM »
Quote from: Chris on May 28, 2011, 04:37:26 PM
Should we really be posting peoples facebook pages on here? We had a discussion about posting peoples names from facebook before and that was removed due to privacy concerns.

I removed the personal info.
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #9 on: May 28, 2011, 05:00:26 PM »
Quote from: kitkatz on May 28, 2011, 03:44:14 PM
Remember anyone can say pretty much anything on Facebook and on Message Boards.  Her outlook is sunshine and roses.  Let her have it. It is one opinion.
:thumbup;
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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
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