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Author Topic: You don't LOOK sick  (Read 8304 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« on: November 05, 2012, 11:09:20 PM »

 ::)
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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
Jean
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« Reply #1 on: November 06, 2012, 01:02:21 AM »

 :yahoo;   :yahoo;   :rofl;   :rofl;   :rofl; 
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One day at a time, thats all I can do.
Grumpy-1
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Make me the person my dog thinks I am

« Reply #2 on: November 06, 2012, 05:03:38 AM »

Oh gotta to print that out and hand it to those folks that don't understand what we are going through....    :rofl;    :2thumbsup;     :yahoo;   Grumpy
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Make me the person my dog thinks I am
Riki
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« Reply #3 on: November 06, 2012, 11:31:05 AM »

LOVE IT!!!  I'm uploading that to facebook......
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Sydnee
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« Reply #4 on: November 06, 2012, 01:19:39 PM »

 :yahoo;love it :yahoo;

had some say that the other day.
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After a hard fight to not start I started dialysis 9/13
started on PD
hoping for home hemo starting to build a fistula 1/14
cause PKD diagnosed age 14

Wife to Ed (who started dialysis 1/12 and got his kidney 10/13)
Mother to Gehlan 18, Alison 16, Jonathan 12, and Evalynn 7. All still at home.
www.donate2benefit.webs.com
bleija
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« Reply #5 on: November 06, 2012, 03:10:44 PM »

love this
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MommyChick
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Me & my precious Miracle !!!

« Reply #6 on: November 06, 2012, 03:36:54 PM »

Made me laugh  :rofl; ... I get that comment a lot!
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
iKAZ3D
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06/08/2013

« Reply #7 on: December 10, 2012, 12:44:55 PM »

Weston Likes, he likes a lot :D
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August 16th, 1996 - Born in Sacramento, CA; Born with Posterior Urethral Valves
September 2008 - Large Reconstruction, bladder augmented, stoma placed and ureters fixed
September 2010 - Needed emergency hip surgery for Slipped Capital Femoral Epithysis
September 2010 - Started Dialysis without refusal (Big mistake)
Summer/Fall 2011 - "Inactivated" on the Inactive Transplant List
October 2012 - Activated on the transplant list
November 30th, 2012 - Surgeons threatening to not to a transplant based on weight
April 25th, 2013 - Lost 25 pounds (97kg), however developed highly resistant bladder bacteria, Inactivated from list until eradicated
May 15th, 2013 - Finally cleared of the bacteria, reactivating on list imminent.
May 24th, 2013 - Reactivated on the list!
June 8th, 2013 - Transplant!
June 19th, 2013 - Dialysis Catheter officially removed and returned home from the hospital!
June 21st, 2016 - Sleeve Gastrectomy
March 11th, 2019 - Revision to Gastric Bypass
duncan reamhiar
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Forward The Forty Twa

« Reply #8 on: August 26, 2013, 02:14:56 AM »

i've lost over 30 lbs in about 3 months because 'm too sick to eat much at the moment.. i keep getting people telling me how GREAT i look.. pish on them...
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Duncan Reamhair
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« Reply #9 on: August 26, 2013, 06:03:52 PM »

This needs to be on the sign up page! It is sooo true it is funny.
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Charlie B53
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« Reply #10 on: December 18, 2014, 11:56:25 AM »


I had to save this so I can send it to family and friends when they say that I 'Dont look sick'!

Thanks!
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Michael Murphy
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« Reply #11 on: December 18, 2014, 12:40:23 PM »

I don't know what I hate more," you don't look sick" or when I explain I can't schedule anything Monday, Wednesday, or Friday because I am on Dialysis" and the person responds "I am sorry about that."  What the           Are they sorry for .  It is what it is. A response of that must suck would I think be ok.
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: December 26, 2014, 01:53:24 PM »

Lately people keep saying to Jenna: "Are you alright? You look so pale." She hates it!
She is really annoyed because she tries to look good.
She has always been very fair, her skin is naturally very white, but perhaps the anemia is contributing.
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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
noahvale
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« Reply #13 on: December 26, 2014, 02:58:44 PM »

*
« Last Edit: September 23, 2015, 01:16:50 AM by noahvale » Logged
Joe
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« Reply #14 on: December 28, 2014, 10:18:11 AM »

Karol, I had the same issue while I was doing PD. People always were telling me how pale I was, but I knew it was the anemia that was causing it. We fought the hemoglobin levels for months until I got the Epo dose balanced out. I was still pale, but not as bad. Hope Jenna works her way through this.
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Charlie B53
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« Reply #15 on: December 29, 2014, 07:19:34 PM »


I still consider myself to be one of the 'new guys' in here, so please understand that I don't really know anyone.

But I can't help wonder of Jenna is in her teens.  Appearance to a teen, even young adults, can be how to say, life altering (?).  Fitting 'In' with their peers.  And the younger they are to more hurtful some can be.  They haven't learned tact, patience, understanding, etc.  All adds up to very distressing times.

Jenna may not know all this, yet.  She still has a lot of learning about how peoples minds work, and how hurtful they can be without meaning to.

It can be hard on YOU in trying to teach her some of these things, she may not understand, yet.

Good Luck
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kitkatz
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« Reply #16 on: December 29, 2014, 09:14:42 PM »

I believe Jenna is in her late 20s.  She is the same age or close to my daughters' ages.  She understands what is going on perfectly.  Dealing with all this crappy disease is not easy for anyone.
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chuckdims
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« Reply #17 on: December 30, 2014, 12:52:57 PM »

I'm 28 and look normal.  One day at the grocery store my B/P dropped very low.  (My BP is always low.  A normal BP for me is 85/55.  So it must have dropped to 60s/40s, that's when I have trouble.). Anyway, I used a motorized cart and I got lots of looks.  Oh well.
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1986 - Born w/ Deformed Ureters
1989 - Bilateral Reimplantation of Ureters (Emory University -- Atlanta, GA USA)
2004 - Reduced Kidney Function Noted on Bloodwork, Kidney Biopsy Performed, Diagnosed w/ Stage III FSGS
2012 - AV Fistula Placed (University of Kansas -- Kansas City, KS USA)
2013 - Started In-Center Hemodialysis (September)
2014 - Started Home Hemodialysis on NxStage (July)
kristina
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« Reply #18 on: January 26, 2015, 02:09:34 PM »

I am always told by doctors, that I don't look sick and sometimes I feel as if "not looking sick" has been a great disadvantage in my life ...
... For example, when cerebral haemmorrhages were threatening my life, I "did not look sick" and that was the reason,
 why it took so long for doctors to take my condition serious enough and finally search for a diagnosis,
which was made at the very last moment... if doctors would have waited any longer, I would not have survived...
... Even when I suffered the stroke I had again the same problem with doctors and they did not take my condition serious enough,
because, again I did not look sick, even though the stroke had made me instantly half-sided paralyzed
and I could not speak anymore and was extremely distressed by trying hard to express myself without having a voice or the words ...
...but apart from that, I did not "look particularly sick"... and again, it took a long while for doctors to diagnose the stroke ...
One of the reasons why I hardly ever really look sick, is because I always take great care of myself and would never "let myself go"
and so medical misjudgements can ealily be made, even when it is life-dangerious, because some doctors are "only human as well"...
and sometimes medical judgements are made by first looking at the patient... and things can easily go wrong when the patient "looks so well"...
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #19 on: March 02, 2015, 10:53:24 PM »


I still consider myself to be one of the 'new guys' in here, so please understand that I don't really know anyone.

But I can't help wonder of Jenna is in her teens.  Appearance to a teen, even young adults, can be how to say, life altering (?).  Fitting 'In' with their peers.  And the younger they are to more hurtful some can be.  They haven't learned tact, patience, understanding, etc.  All adds up to very distressing times.

Jenna may not know all this, yet.  She still has a lot of learning about how peoples minds work, and how hurtful they can be without meaning to.

It can be hard on YOU in trying to teach her some of these things, she may not understand, yet.

Good Luck

She just turned 29 in Nov., but yeah, dealing with kidney disease the last 14 years, I think she has seen and heard it all.
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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
Riki
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« Reply #20 on: March 03, 2015, 12:58:00 PM »

The thing that gets me when they say this.. sure, I've been on dialysis for 11 years.. I have a high hemoglobin, so i'm not pale, so I look fine... It makes me wonder when someone says "oh, but you don't look sick," how do they think I should look?
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
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