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Author Topic: Went to clinic this week ... update :)  (Read 5845 times)
donnia
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me and my donor Joyce
« on: February 20, 2009, 09:11:58 PM »
Well....I know I haven't been on in a while, I have been very busy. I have worked as a court clerk for my county for almost 5 months now. Work has been going great!

I have been having alot of problems with my right hip though. I have to have a hip replacement in May. They will be taking me off the Rapamune and put me on Prograf for a few months so I will heal better.

They were going to start weaning me off the Prednisone in June, but they decided to go ahead and start now.  I alternate 10mg and 5 mg for 2 weeks then I will take 5 mg for 2 weeks then alternating 5 and 0 for 2 weeks... then 0!!! I should be off completely on April 1st.

I did my labwork and everything looked great except my cholesterol. It has been high since before transplant  With me getting off the Prednisone and losing weight, that should get better. My cratinine has been steady at 1.1. My 24 hour creatinine clearance was 101!!! Which means my one new kidney is working like 2 NORMAL kidneys!!! Yay!!!

I will try to get by more often, I have just been so busy!  I work 40 hrs as a court clerk... I also interpret for the state for a  few hours a week.. I also mentor 2 interpreters who want to become certified for 4 hours a week.  I am usually pretty beat when I get home.
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
Joe Paul
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« Reply #1 on: February 20, 2009, 09:18:27 PM »
Glad to hear the kidney is working so good  :thumbup;   I hope your hip surgery goes well, good luck with that.
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"The history of discovery is completed by those who don't follow rules"
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Transplant Jan. 8, 2010
pelagia
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« Reply #2 on: February 20, 2009, 09:28:46 PM »
 :2thumbsup; Hey Donnia, it's great to hear that you are doing well.  They are weaning you off the prendnisone, too.  Wow.  They keep telling my husband that he has to wait at least a year to go down to 5 mg/day.  I hope the surgery goes well.  Take care.  :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
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« Reply #3 on: February 21, 2009, 10:54:59 AM »
Donnia, you are doing just what you should be doing after a transplant---living!   It is good to hear from you and know you are doing well.    And now a new hip?  You are going to be full of new body parts!   Hope that surgery goes well and you recover fast.   Stop by once in a while.  We like to know how you are.   :cuddle;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Romona
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« Reply #4 on: February 21, 2009, 01:57:08 PM »
 :clap; Glad thing are going well!
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jessup
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« Reply #5 on: February 21, 2009, 05:24:08 PM »
 :2thumbsup;
great news mate
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kellyt
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« Reply #6 on: February 21, 2009, 05:29:44 PM »
Sounds great!  You're doing great!   :2thumbsup;   :clap;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
paddbear0000
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« Reply #7 on: February 22, 2009, 08:58:36 PM »
 :grouphug;  Fabulous news!!  :cheer:
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
MIbarra
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« Reply #8 on: February 22, 2009, 10:08:16 PM »
 :2thumbsup;  Wonderful to hear from you and so glad that kidney is working out great!  :cuddle;
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Cadaver transplant April 29, 2007
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« Reply #9 on: February 23, 2009, 09:54:47 AM »
Great news!! :2thumbsup;  You just keep on keeping on! :cuddle;
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donnia
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me and my donor Joyce
« Reply #10 on: February 23, 2009, 06:42:32 PM »
Thanks so much everyone!  I feel so fantastic (besides the nagging hip!!)

It's amazing how good I feel.  It's almost scary! 

I am praying my diabetes goes away.... I was hoping for a miricle..... thinking my bs would immediately go back to normal the first day I started alternating 5 and 10 mg!  LOL    :Kit n Stik;

Wishful thinkin huh!  Oh well.... life is beautiful!  I want you all to know that every night I go to bed and say a prayer for my IHD family.   :grouphug;
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #11 on: February 24, 2009, 10:25:25 AM »
 :bandance; :bandance; :bandance; :bandance; :bandance; :bandance;
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
okarol
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« Reply #12 on: May 02, 2009, 05:57:14 PM »
Quote from: donnia on February 20, 2009, 09:11:58 PM
Well....I know I haven't been on in a while, I have been very busy. I have worked as a court clerk for my county for almost 5 months now. Work has been going great!

I have been having alot of problems with my right hip though. I have to have a hip replacement in May. They will be taking me off the Rapamune and put me on Prograf for a few months so I will heal better.

They were going to start weaning me off the Prednisone in June, but they decided to go ahead and start now.  I alternate 10mg and 5 mg for 2 weeks then I will take 5 mg for 2 weeks then alternating 5 and 0 for 2 weeks... then 0!!! I should be off completely on April 1st.

I did my labwork and everything looked great except my cholesterol. It has been high since before transplant  With me getting off the Prednisone and losing weight, that should get better. My cratinine has been steady at 1.1. My 24 hour creatinine clearance was 101!!! Which means my one new kidney is working like 2 NORMAL kidneys!!! Yay!!!

I will try to get by more often, I have just been so busy!  I work 40 hrs as a court clerk... I also interpret for the state for a  few hours a week.. I also mentor 2 interpreters who want to become certified for 4 hours a week.  I am usually pretty beat when I get home.

Just heard from Donnia - her hip replacement surgery went well but she's had a huge spike up in her creatinine - they think it might be Prograf toxicity as they started the change from Rapamune a couple days before the surgery. She is in the hospital, had dialysis yesterday and today, please say a prayer for her and keep her in your thoughts.   :grouphug;
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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
kellyt
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« Reply #13 on: May 02, 2009, 06:04:03 PM »
I was just thinking about her today.  I hope she's doing better...
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
willieandwinnie
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« Reply #14 on: May 02, 2009, 07:06:30 PM »
 :grouphug; I say an extra prayer for her tonight. Damn, I hope things turn around.  :cuddle;
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monrein
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« Reply #15 on: May 02, 2009, 08:29:27 PM »
I really was unhappy to read this news.  Thinking of you Donnia and sending good thoughts your way.  :cuddle;
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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
donnia
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me and my donor Joyce
« Reply #16 on: May 02, 2009, 08:50:25 PM »
Well...thy have lowered my Prograf from 4 in the AM and 4 in the PM  to 1 in the AM and 1 in the PM.  This has been a very scary ordeal for me.  I have just wanted to put my face in my hands and bawl....  I can't believe this is happening!  I don't understand  :'( 

My hip surgery went well.  I have gotten better and better every day with my hip.  I can finally allllmost take a good step with pressure on the right side.  My other hip and my knees don't hurt at all anymore which is great! 

Tuesday after surgery, I knew something was wrong.  I started running fever (my fever went as high as 104.8!!!).  At the same time, my creatinine went to 2.23 (yep I freakkked out).  The next day I noticed I was not producing enough urine.  We did labs again and they sent me to dialysis.  I asked my nephrologist about my latest creatinine and he advised that it was over 5.  I wanted to scream and beat on something.  So far, the highest my creatinine has gotten was 5.75..... ya know..... dialysis sux!

So far, I have done 2 dialysis sessions..... that is two to many!  I was actually getting down on myself, and in walked my donor!!!  Excuse my language but she said...."get your damn head up!  We kicked this kidney failure bs once, and were gonna do it again!"  It was so wonderful to see her!!!!  It instantly made me feel better!  She said "your a figher damnit!!  I'm here to woop some ass with you"

Thats what I plan on doing.... whoopin this ass... It aint gonna get me down.

Prayers would be greatly appreciated :)
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
pelagia
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« Reply #17 on: May 02, 2009, 09:05:37 PM »
I'll be thinking positive thoughts and saying some prayers for you, too.  Hopefully this is just a bump in the road. 
 :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
monrein
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Might as well smile
« Reply #18 on: May 02, 2009, 09:06:24 PM »
Prayers, crossed fingers, vibes, telepathic strength, whoop ass karate chops...you've got them all coming your way Donnia. 
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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
Wattle
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« Reply #19 on: May 03, 2009, 01:46:50 AM »
Fingers, toes, legs, arms and eyes crossed for you here Donnia.


 :Kit n Stik;  Stay strong and kick some butt    :cuddle;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
rose1999
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« Reply #20 on: May 03, 2009, 02:20:11 AM »
Prayers and all those other things coming your way  :cuddle;
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rookiegirl
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« Reply #21 on: May 03, 2009, 04:48:05 AM »
You are in my thoughts and prayers.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
David13
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« Reply #22 on: May 03, 2009, 04:54:28 AM »
Positive thoughts and prayers for you, Donnia.
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donnia
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me and my donor Joyce
« Reply #23 on: May 03, 2009, 05:26:25 AM »
Went to dialysis last night again :(  BUT..... Just got my labs that they took at 4 and my creatinine was 3.5!!!  Going in the right direction! :flower;
Logged
Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
willieandwinnie
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« Reply #24 on: May 03, 2009, 06:07:33 AM »
 :waving; Donnia. I will continue with the thoughts and prayers. Creatinine heading in right direction.  :bow;  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
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