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Author Topic: I hate Prograf  (Read 10462 times)
monrein
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Might as well smile
« Reply #25 on: May 25, 2010, 03:16:51 AM »
Loved hearing that you've had some good days.   :yahoo;
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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
MooseMom
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« Reply #26 on: May 25, 2010, 12:03:54 PM »
That is such wonderful news!  It really is!  It's amazing what some warm sunshine will do for your mood.  I am just so thrilled to hear this!
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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."
cariad
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What's past is prologue
« Reply #27 on: May 25, 2010, 05:39:58 PM »
Thanks for sharing in my happiness, Monrein, Sunny, and MooseMom!  :grouphug;

Another great day today, and warm. HAHAHAHAHA! I win, Prograf! :boxing;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
cariad
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What's past is prologue
« Reply #28 on: May 26, 2010, 02:46:09 PM »
My Prograf level was too high - 11.9! I am back to .5/.5. so hopefully this streak I am on will gain even more momentum. :yahoo;

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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
okarol
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Photo is Jenna - after Disneyland - 1988

WWW
« Reply #29 on: May 27, 2010, 05:29:58 PM »
 :bandance; Great!!!!!!!!!
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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
Chris
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« Reply #30 on: May 27, 2010, 10:00:15 PM »
Less meds always better. ;D
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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?
cariad
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What's past is prologue
« Reply #31 on: May 30, 2010, 08:01:27 PM »
Quote from: Chris on May 27, 2010, 10:00:15 PM
Less meds always better. ;D

Were truer words ever written? :2thumbsup;
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
Chris
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WWW
« Reply #32 on: May 30, 2010, 10:16:44 PM »
I'm a person of so few words.  :rofl;
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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?
bette1
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My dear daughter
« Reply #33 on: August 21, 2010, 07:31:39 AM »
I am so glad I saw your post.  I am having the same problems with pain and breathlessness.  I thought I was going crazy.  I have an appointment on 8/31, but I am going to call them on Monday.  I have been taking tylonal and hoping it would get better, but it's not.   

The difficult thing for me is that because I am on my second transplant and african american, they want to keep my levels high.  But I can't live in constant pain.  It never dawned on me that this could be the prograf.  I thought I was just out of shape. 
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
cariad
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What's past is prologue
« Reply #34 on: August 21, 2010, 11:47:17 AM »
I hope you find the answer, Bette. The pain is absolutely miserable, and I am now on a high dose (2/2) and my level is only at 6.8, which is still considered low. I apparently metabolize it really quickly. I think my body is trying to get this poison OUT. They have given up on hitting my target of 8-10.

Good luck!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
bette1
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Posts: 316


My dear daughter
« Reply #35 on: August 21, 2010, 02:47:07 PM »
I am on 3/4.  It's been really hard.  Were going to the airport today and I know that I'll have to use a wheelchair.  THis sucks.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
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