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Author Topic: Jess21 gets 2 kidneys from pediatric donor  (Read 13219 times)
Chris
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« Reply #25 on: July 09, 2009, 10:08:30 AM »
How you feel with the new meds Jess?
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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?
Jess21
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« Reply #26 on: July 09, 2009, 12:10:13 PM »
So far, so good, but a bit overwhelming.  Lots to take!!
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Chris
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« Reply #27 on: July 09, 2009, 12:15:12 PM »
Yeah that was a shocker to me too, but they will dwindle down over time.
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?
paris
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« Reply #28 on: July 09, 2009, 12:34:53 PM »
Yea for those kidneys doing their thing!   :2thumbsup;   I hope you know how excited everyone is for you.   :yahoo;   :clap;   :cheer:   :bandance;    love you!!!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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« Reply #29 on: July 09, 2009, 01:40:50 PM »
 :yahoo;  :yahoo;  :yahoo;
Jess - thanks for the update!
I am so happy!!
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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
pklipe57
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« Reply #30 on: July 09, 2009, 01:55:45 PM »
Your news is wonderful.  We pray for a long, long life with your new kidneys.
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Romona
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« Reply #31 on: July 09, 2009, 02:17:09 PM »
 :yahoo;
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circleNthedrain
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« Reply #32 on: July 11, 2009, 04:00:03 PM »
Jess this is the best news ever!!!
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
willowtreewren
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My two beautifull granddaughters

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« Reply #33 on: July 11, 2009, 04:02:00 PM »
So glad! So glad!  :cheer: :cheer: :cheer:

Best wishes for a long relationship with these young kidneys!  :2thumbsup;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
lola
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I can fly!!!
« Reply #34 on: July 11, 2009, 06:53:02 PM »
 :bandance; :bandance; :bandance; :bandance;
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RichardMEL
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« Reply #35 on: July 12, 2009, 05:12:27 AM »
Absolutely amazing that you could be home just 4 days after such a wonderful gift!!!! That is incredible!!! So happy for you!!!!

(at the same time I also feel for the donors family - specially because it was a young donor.. I hope they know in their grief what wonderful gifts of life they have given to others through their thought to donate)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Rerun
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« Reply #36 on: July 12, 2009, 05:44:20 AM »
Wonderful news Jess.

             :2thumbsup;

Just curious... did they put a kidney on each side?
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cookie2008
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« Reply #37 on: July 12, 2009, 09:12:48 AM »
 :bandance; :bandance; :cheer: :cheer:
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
Jess21
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« Reply #38 on: July 12, 2009, 09:33:06 PM »
Quote from: Rerun on July 12, 2009, 05:44:20 AM
Wonderful news Jess.

             :2thumbsup;

Just curious... did they put a kidney on each side?
no they are both on the right side
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Des
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« Reply #39 on: July 20, 2009, 07:49:45 AM »
yeah for the kidney!!!!!!
 and a question.

Are these kidneys going to grow? I just wondered. mmmmm
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Jess21
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« Reply #40 on: July 20, 2009, 09:12:18 AM »
Quote from: Des on July 20, 2009, 07:49:45 AM
yeah for the kidney!!!!!!
 and a question.

Are these kidneys going to grow? I just wondered. mmmmm

The doctor said they will grow a little, but not a lot.
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
TeenHatesDialysis
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« Reply #41 on: July 20, 2009, 11:21:10 PM »
 :2thumbsup; Jaclyn and I are so excited for you! Drink lots of water and eat lots of pizza! :yahoo;

Jaclyn drinks 3.5 L per day, but can't drink or eat anything between 7:30am and 9:30am and 7:30 pm and 9:30pm because she takes her prograf at 8:30am and pm. Do you have similar non eating/drinking before and after Prograf? Do you take Prograf and Cellcept?

No more dialysis!  :cheer:
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Jess21
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« Reply #42 on: July 21, 2009, 10:16:03 AM »
Quote from: TeenHatesDialysis on July 20, 2009, 11:21:10 PM
:2thumbsup; Jaclyn and I are so excited for you! Drink lots of water and eat lots of pizza! :yahoo;

Jaclyn drinks 3.5 L per day, but can't drink or eat anything between 7:30am and 9:30am and 7:30 pm and 9:30pm because she takes her prograf at 8:30am and pm. Do you have similar non eating/drinking before and after Prograf? Do you take Prograf and Cellcept?

No more dialysis!  :cheer:

I take Prograf.  I don't eat anything until after I take my Prograf at 8am, which is no big deal since I'm not really a big breakfast eater, then I eat dinner about 6, then take my 8pm dose, then don't eat anything an hour after that.
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Chris
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« Reply #43 on: July 21, 2009, 02:45:24 PM »
I do not see anything on the packet information from Prograf  and the pharmacy about not eating food, but I do see it on CellCept though not to eat 1 hours before taking or take 2 hours after eating.

Then again, if you take all pills at once, it doesn't matter as long as you follow the rules of how to take them.
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?
Jess21
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« Reply #44 on: July 21, 2009, 02:54:49 PM »
Quote from: Chris on July 21, 2009, 02:45:24 PM
I do not see anything on the packet information from Prograf  and the pharmacy about not eating food, but I do see it on CellCept though not to eat 1 hours before taking or take 2 hours after eating.

Then again, if you take all pills at once, it doesn't matter as long as you follow the rules of how to take them.

It says on the sheet they gave me and on the med bottle
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Chris
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« Reply #45 on: July 21, 2009, 02:59:54 PM »
I'll have to look on their website because it doesn't show in the 3 bottles from the manufacture I have. I better look at the use by date to. I shouldn't have thrown out the latest mail I got from Prografs Transplant Living that had their insert.
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?
Jess21
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« Reply #46 on: July 21, 2009, 03:14:27 PM »
You can either take it with food or not with food, once you start with one you are supposed to stay with it so it metabolizes the same way everyday.  UW started me on it without food.
Logged
Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Wattle
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« Reply #47 on: July 22, 2009, 02:10:51 AM »
 :waving;   Hey Jess  SNAP!!   :cuddle;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
Chris
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« Reply #48 on: July 22, 2009, 03:05:11 PM »
Quote from: Jess21 on July 21, 2009, 03:14:27 PM
You can either take it with food or not with food, once you start with one you are supposed to stay with it so it metabolizes the same way everyday.  UW started me on it without food.

I went to the Prograf website and saw that it now says not to take with food. Also downloaded a 36 page manual about Prograf.

I was started on Prograf and CellCept and always take it without food because that is what they had me due to CellCept warnings and I don't see taking  all my meds at different times just to eat unless it's an emergency. At a conference in May the doctors and pharmacologist where talking about how some people can take  their meds with food if they can tolerate it, but not everyone can they mentioned. Think I would have an upset stomach if I did that!

Learn something new everyday.
« Last Edit: July 24, 2009, 10:13:29 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?
chris73
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its me ...Chris

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« Reply #49 on: July 24, 2009, 07:04:18 PM »
 I take cellcept and prograf, I eat b4 & after med time,but wasn't told either which is correct.Tx clinic & neph says i doing great ,now I'm concerned that I am wrong by eating and drinking at med time.Hope I'm not hurting anything by eating near med time......God Bless!..Chris
Logged
11/10/07 esrd
12/07/07 permcath placed
dialysis started 2 days later
transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
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