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Author Topic: Silly me  (Read 1803 times)
edersham
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« on: June 27, 2010, 08:25:51 AM »

I'm 3  mo post transplant at Mayo in Phoenix and have been on a steroid free protocol up to now.  I thought the only thing that would land me on prednisone would be some sign of rejection. My first biopsy two months ago was described as beautiful several times and my labs last week were good except for  a very low white blood cell count. Because of the risk of that they have replaced 750 mgs of cellcept twice daily with 10 mg of prednisone once a day and ordered the wbc count retested along with a CMV test for precaution. In 30 days if the next biopsy is clear and the wbc count has doubled they say they will put me back on a lower dose of cellcept and remove the steroids(we'll see).

In the meantime all my reading here has prepared me for the side effects. I know its a relatively low dose but it sure causes a blood sugar roller coaster and the medical people aren't much help because they want to increase the insulin two units per dose until I regain control. Ive been a diabetic for 25 years and I have a pretty good idea how my body absorbs insulin(not) so it would probably take about a month to stabilize at that rate. On the good side I can hit my golf drives about 15 yards farther. About the appetite thing, WHOA NELLIE, I want to eat everthing within miles and my wife Karan just got home yesterday from knee replacement surgery( she's doing very well) so I am chief cook and bottle washer and the only thing I know how to do is barbecue. At 2 AM this morning I was looking at the German Shepard and golden retriever and wondering if I could fit both of them on the rotisserie and serve them with a nice chianti(only kidding). I settled for microwave nachos instead(I know it should have been low sodium rice crackers with fat free taste free cream cheese but the dogs were in danger).

On another note I got an email from nkf announcing a new website message board for families facing kidney disease.  I will check it out but I know I will continue to find the best information, kinship, and spicy attitudes that I enjoy only here on ihd.Thank you everyone.
Ed

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jbeany
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« Reply #1 on: June 27, 2010, 01:25:10 PM »

Quick, run to the store for some hot dogs, and save the real ones!

Prednisone appetite is horrible, isn't it?
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

natnnnat
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« Reply #2 on: June 27, 2010, 04:32:32 PM »

Sounds like you're doing okay then.    :thumbup;
How's your wife's knee?
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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.
edersham
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« Reply #3 on: June 27, 2010, 06:42:59 PM »

Thanks for asking about Karan's knee. She's doing great so far. Surgery was Wednesday afternoon. Three different periods of extreme pain, one in recovery  room, one thenext morning and one Friday morning. The first two were because the nerve block groin catheter wasn't working on both main nerves that run through the knee and the third when they took it out. All three were dealt with fairly quickly by the hospital staff and she came home last night. She's been walking with a walker  since Thursday morning and is improving by leaps and bounds yesterday and today. Her surgeon said there was so much bad arthritis in the knee that he feels she's going to be really happy with the results when fully healed. She had 12 hours of lumbar fusion (L2-5 and S-1)in August 2008 which also was very successful then I went into kidney failure late 2008 and ESRD late 2009 followed by dialysis and a very wonderful live donor transplant from our best friend Christie in March 2010. Karan is scheduled  for fusion of C5-7 vertebrae in her neck August 26th.Her injuries date back to a fall a she took from a ladder I failed to secure properly when we were building our place in Alaska 25 years  ago. I'm glad I've paid those insurance premiums for 38 years.
.
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paris
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« Reply #4 on: June 27, 2010, 08:13:24 PM »

Oh your poor dogs!  I laughed out loud reading your post.  You two certainly have been through a lot of trials and tribulations.  It seems like you both bounce back and just keep on kicking!  I love your spirit!!  You give us all strength and set a great example for us.   Hope they can get your meds all in order soon.  Keep us posted. 
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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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