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Author Topic: Surgery Update/Complication  (Read 16132 times)
cariad
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What's past is prologue
« Reply #50 on: October 07, 2010, 07:30:35 PM »
Creatinine looks great. Congratulations!

What's your Prograf target, Bassman? Can't help but notice how the prograf and creat numbers rise and fall together....
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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
BASSMAN
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« Reply #51 on: October 19, 2010, 05:45:44 PM »
Quote from: cariad on October 07, 2010, 07:30:35 PM
Creatinine looks great. Congratulations!

What's your Prograf target, Bassman? Can't help but notice how the prograf and creat numbers rise and fall together....

10 is my target right now.
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #52 on: October 19, 2010, 05:50:06 PM »
Lab Report

creatinine 1.65

Prograf    10.2
 
got chewed for not drinking enough water
BUN elevated and urine too concentrated
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
okarol
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« Reply #53 on: October 19, 2010, 07:04:34 PM »
 :beer1; :wine; There's water in beer and wine hehehe
It was hard for Jenna to drink so much water, because she was never thirsty.
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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
chook
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Born to be a Granma!
« Reply #54 on: October 19, 2010, 07:05:47 PM »
C'mon Bassman - drink up!!!! I've been following your recovery: think of me as your cheerleader (sadly I'm a bit too old for the short skirts but I do yell a great 'C'mon'!)  :cheer:
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
kellyt
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« Reply #55 on: October 19, 2010, 09:58:17 PM »
How do you feel when your Prograf level is in the 10's?  I can always tell when my level is up there (9-10) because I feel like I have a sunburn and like I could shoot fire out of my eyes.   I do well in the 6-8's, which is where he wants me.

Congratulations BTW!!!!!    :2thumbsup;
Logged
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
paris
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« Reply #56 on: October 20, 2010, 07:59:05 AM »
I am still at the 8-10 prograf level.  I have had the dosage changed 3 times to find the right level for now.    Yes, the drinking can feel like a job somedays!  I always get in between 70-80 ounces, but they tell me to try for 75-100 ounces a day.  Yuck!  I think that is why I'm not hungry!  I was reminded not to drink just water; to mix some milk, light juices,etc.  Just water messes up the electrolytes (or so I have been told  :rofl;)  Luckily, I love milk (I think of Rerun every time I have a glass of milk!).     Remember the days when you could eat or drink  anything and never gave it a second thought!?    :rofl;

I like seeing your labs.  It helps me feel I am on the right path.  Thanks for sharing your journey with us.     :2thumbsup;
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BASSMAN
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« Reply #57 on: October 20, 2010, 03:50:23 PM »
Quote from: okarol on October 19, 2010, 07:04:34 PM
:beer1; :wine; There's water in beer and wine hehehe
It was hard for Jenna to drink so much water, because she was never thirsty.

I love beer and wine but I am abstaining for now.
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #58 on: October 20, 2010, 03:51:52 PM »
Quote from: chook on October 19, 2010, 07:05:47 PM
C'mon Bassman - drink up!!!! I've been following your recovery: think of me as your cheerleader (sadly I'm a bit too old for the short skirts but I do yell a great 'C'mon'!)  :cheer:

That's what I need a cheerleader!!!!  Thank you!!!!  Let you hair down and put on that short skirt anyways!
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #59 on: October 20, 2010, 03:53:15 PM »
Quote from: kellyt on October 19, 2010, 09:58:17 PM
How do you feel when your Prograf level is in the 10's?  I can always tell when my level is up there (9-10) because I feel like I have a sunburn and like I could shoot fire out of my eyes.   I do well in the 6-8's, which is where he wants me.

Congratulations BTW!!!!!    :2thumbsup;


I get slight tremors, hot and tingly feet.  He wants me at 10 right now.
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #60 on: October 20, 2010, 03:55:37 PM »
Quote from: paris on October 20, 2010, 07:59:05 AM
I am still at the 8-10 prograf level.  I have had the dosage changed 3 times to find the right level for now.    Yes, the drinking can feel like a job somedays!  I always get in between 70-80 ounces, but they tell me to try for 75-100 ounces a day.  Yuck!  I think that is why I'm not hungry!  I was reminded not to drink just water; to mix some milk, light juices,etc.  Just water messes up the electrolytes (or so I have been told  :rofl;)  Luckily, I love milk (I think of Rerun every time I have a glass of milk!).     Remember the days when you could eat or drink  anything and never gave it a second thought!?    :rofl;

I like seeing your labs.  It helps me feel I am on the right path.  Thanks for sharing your journey with us.     :2thumbsup;

I am more than happy to share my experiences.  I figured someone might want to compare lab notes.  Thank you for taking an interest!
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #61 on: October 20, 2010, 04:00:27 PM »
Oh yea,  I forgot to mention,

I am now off of Nystatin.  Acyclovoir and Bactrim. 

Current drugs

Prograf 4mg bid
Myfortic 720mg bid
Prednisone got lowered to 7.5mg once a day
Niphedipine 90mg  once a day
Pepcid 20mg once a day

got my flu shot yesterday

De da de da de da.....That's all folks!
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #62 on: November 03, 2010, 02:43:50 PM »
Lab report for today with my local neph.

Creatinine 1.42
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
okarol
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« Reply #63 on: November 03, 2010, 04:38:14 PM »
 :clap; Bravo!
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
BASSMAN
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« Reply #64 on: November 16, 2010, 04:09:14 PM »
Today's results

Creatinine 1.38

Cholesterol high - added Zocor
Magnesium low  - added Magnesium supplement
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
BASSMAN
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« Reply #65 on: December 15, 2010, 07:21:01 PM »
Still going down

Today's lab

creatinine 1.2
prograf 12

down to 3mg Prograf twice daily
Logged
Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #66 on: December 15, 2010, 09:51:10 PM »
 :bandance; Great numbers!!
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 #67 on: December 15, 2010, 10:05:57 PM »
Yep!
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Galvo
chook
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Born to be a Granma!
« Reply #68 on: December 19, 2010, 06:50:35 PM »
Great to read that everything is continuing to go well  :thumbup;
Logged
Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
natnnnat
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« Reply #69 on: December 20, 2010, 04:12:17 AM »
How are you feeling, apart from numbers, what's it like to be bassman these days?  And how is Colleen?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
natnnnat
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« Reply #70 on: December 20, 2010, 04:12:45 AM »
Mind you, the numbers are  :thumbup; :thumbup; :thumbup; *great* to hear too.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
BASSMAN
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« Reply #71 on: January 15, 2011, 08:07:21 AM »
1/12/11

Creatinine 1.3
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Membranous Glomerulonephritis confirmed by biopsy in  April 1989
currently Stage IV CRF
GFR 18
Creatinine 3.9
AV fistula (radiocephalic) placed September 24, 2009
Began transplant evaluation November 11, 2009
Completed transplant eval and approved for transplant February 10, 2010
Received confirmation letter I am on the UNOS list February 18, 2010
Wife began donor testing March 1, 2010
Received living donor preemptive transplant from spouse July 22, 2010

http://www.caringbridge.org/visit/phillipjohnsen
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