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Author Topic: Jenna's hoping to get wait listed  (Read 41527 times)
vandie
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« Reply #25 on: December 21, 2010, 05:13:50 AM »
Ah, great news.  So glad she is taking a proactive role now.  Much better to captain your own ship.  Love you two.
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Life is the journey, not the destination.
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I received a kidney transplant on August 4, 2007.
phyl1215
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« Reply #26 on: December 21, 2010, 05:57:50 PM »
Keeping Jenna and your family in my prayers.
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PD 3 yrs.
TX list 4 yrs.
Deceased donor PERFECT MATCH Kidney transplant July 8, 2012


Learning To Dance In The Rain
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #27 on: December 21, 2010, 06:14:14 PM »
okarol how old is jenna? i feel for her or any young person (even though i'm pushing 30 eek!) trying to deal with this disease and all the pressures of being young.

xo,
R
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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?
Chris
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« Reply #28 on: December 21, 2010, 07:09:56 PM »
Good Luck to her on the appointment.
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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?
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #29 on: December 21, 2010, 07:24:21 PM »
Quote from: rsudock on December 21, 2010, 06:14:14 PM
okarol how old is jenna? i feel for her or any young person (even though i'm pushing 30 eek!) trying to deal with this disease and all the pressures of being young.

xo,
R

Jenna turned 25 last month. She was diagnosed at 15 years old, started dialysis her senior year of high school and got a transplant at 21.

You're very young too!
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #30 on: December 22, 2010, 09:59:52 PM »
aw another kinder spirit.... :)
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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?
Ken Shelmerdine
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Life's a bitch and then you go on dialysis!
« Reply #31 on: December 28, 2010, 03:16:26 AM »
Karol I'm sending my thoughts and best wishes to you and jenna for the best outcome. I'll be thinking of you on the 4th of Jan. :cuddle;
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Ken
paris
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« Reply #32 on: December 28, 2010, 08:01:16 AM »
I'll be surrounding you and Jenna with lots of prayers and love on the 4th.   She has taken such good care of herself this year.   I'm proud of her.   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Ang
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« Reply #33 on: December 29, 2010, 09:20:20 PM »
good  luck :2thumbsup; :2thumbsup; :clap;
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live  life  to  the  full  and you won't  die  wondering
AguynamedKim
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« Reply #34 on: December 31, 2010, 07:15:58 AM »
I'm sure things will go well with the evaluation.  Jenna's so lucky to have an incredible mother like you - you're truly in inspiration.  I'm sending you and Jenna my hope and positive thoughts.
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Pre-dialysis - Intro: http://ihatedialysis.com/forum/index.php?topic=20344.0
edersham
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« Reply #35 on: December 31, 2010, 10:41:25 AM »
Okarol

Like Paris you have contributed so much time to helping members on this board with helpful replies and links to vital information. Here's hoping what you have scattered comes back to you and Jenna in the form of a preemptive transplant and many years of vibrant life after.

Ed
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okarol
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« Reply #36 on: January 04, 2011, 01:45:47 PM »
I have the iPad with me at the transplant evaluation so the waiting is less painful. But of course now they have taken every one of the the other 12 patients for their appts. And we are sitting alone, wondering if we have been forgotten.
They do the orientation in a conference room and each patient was required to bring a friend or family member with them to view the film and here whatbthe transplant nurse and living donor coordinator had to say. Only 2 people asked questions, and you know I was one of them.  :)
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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
breezysummerday
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« Reply #37 on: January 04, 2011, 05:44:44 PM »

Bet it's been a long day!
Hope Jenna gets wait listed   :pray;
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renal failure 6/08
listed 7/09
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AguynamedKim
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« Reply #38 on: January 04, 2011, 08:07:48 PM »
I hope all goes well and Jenna gets on the wait list soon!
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Pre-dialysis - Intro: http://ihatedialysis.com/forum/index.php?topic=20344.0
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #39 on: January 04, 2011, 09:36:57 PM »
Yes, a long day. Took about 6 1/2 hours, then ten vials of blood.
7 steps
Nurse, vital signs
Evaluation class, video and living donor coordinator
Nephrologist, hepatologist
Surgeon
Social worker
Dietician
Financial counselor
Transplant coordinator

Next step is for the team to take case to the committee in 3 weeks. Hopefully it will be good news.
Then they want a pap smear, dental clearance, chest X-ray and abdominal ultrasound.

The wait time in Los Angeles is 10 years. They said that living donation is the way to go.
I asked if they accept altruistic donors met through church or internet or other ways. They do. Also asked if they do preemptive transplants and they said it is preferred. That's a big change from when Jenna was listed there 6 years ago.
« Last Edit: January 04, 2011, 09:52:16 PM by okarol » 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
MooseMom
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« Reply #40 on: January 04, 2011, 09:50:14 PM »
Oh man...did they make her sing and dance, too?  What a long day!!  I'm waiting for the good news!
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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."
Chris
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« Reply #41 on: January 05, 2011, 11:41:10 AM »
3 weeks will go by fast if you do not think about it and are busy with other things. Good Luck to Jenna.
 
Also, where you posting using the iPad? If so, I wonder why I can't with the iPhone since it is the same OS and browser. :urcrazy;
« Last Edit: January 16, 2011, 01:53:36 PM by Chris » Logged
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?
Zach
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"Still crazy after all these years."
« Reply #42 on: January 05, 2011, 01:55:17 PM »
 :thumbup;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #43 on: January 05, 2011, 05:59:53 PM »
hang in there Jenna and Karol!!! thinking of you...

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?
okarol
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Posts: 100933


Photo is Jenna - after Disneyland - 1988

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« Reply #44 on: January 05, 2011, 06:47:22 PM »
Quote from: Chris on January 05, 2011, 11:41:10 AM
3 weeks will go by fast if you do not think about it and are busy with other things. God Luck to Jenna.
 
Also, where you posting using the iPad? If so, I wonder why I can't with the iPhone since it is the same OS and browser. :urcrazy;

Yes the iPad worked great (even though I am slow, and some things I just cannot figure out.)
I wonder if anyone else was posted using an iPhone - that would be a good topic Chris!
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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #45 on: January 05, 2011, 09:55:58 PM »
Got lab results today. Another stable month for Jenna's Brave Little Kidney - still running at creatinine of 3.4 - and it's been one year since the rejection! She celebrates her 4th kidneyversary on Jan. 16. Her GFR is 16 and she could get a transplant anytime, but we'd love to keep this one going as long as possible. The best thing that has happened this year is Jenna's involvement in her care. She's learned so much, and has taken on more responsibility for her meds, appointments, communicating with the doctors and learning about the lab results. And she's taken good care of herself and her kidney.   :bow;
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
galvo
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« Reply #46 on: January 06, 2011, 12:18:00 AM »
Good.
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Galvo
cariad
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« Reply #47 on: January 06, 2011, 03:34:59 PM »
Such great news, Karol. Way to go, Jenna and, of course, the Brave Little Kidney!  :clap;
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AguynamedKim
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« Reply #48 on: January 10, 2011, 05:35:15 AM »
With her active involvement and an incredible roll model helping her, I think Jenna's got a great chance of holding on to her kidney for a good long while.  I am keeping you guys in my thoughts. 
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Pre-dialysis - Intro: http://ihatedialysis.com/forum/index.php?topic=20344.0
sico
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wheres my bike gone?
« Reply #49 on: January 10, 2011, 05:39:59 AM »
This sux, her needing another kidney...

Wish she wasn't going through it all again so soon  :(
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Brad      "Got myself a one way ticket, going the wrong way" - Bon Scott

6/11/08 diagnosed with ESRF, dialysis that day

HD and PD

8th of April 2010 Live kidney transplant from my father.
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