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Author Topic: Dilemma  (Read 2238 times)
GoingThere
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« on: December 15, 2012, 03:17:41 AM »

Me again:-)

Well the detailed test showed I have no humoral rejection, only moderate cellular - vascular rejection. Today I'll get the last pulse of medrol and I've already started to get Octagam for antibodies.
Next week I'll have another biopsy which will show if there is any progress.
Doctors told me there are even stronger antirejections drugs but with serious side effect for the rest of my life. I think that this last drugs won't be acceptable for me. In that case kidney goes out.

What you would do? Fight till the end or you would put kidney out, heal your wounds and try it another time with different kidney?

I know my Pra will now be much higher so I think I will accept my best friends offer to donate her kidney to me. She is pushing all the time.:-)

Physically I'm already fit. Just ten days after tx I as able to climb to eighth floor, today I'll start weight lifting.

Uros

p.S.: medrol makes me going crazy. Cannot sleep, I'm anxious,so they've put me on Seroquel. Also I have high sugar because of pulses of medeol.
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1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
Rerun
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« Reply #1 on: December 15, 2012, 05:41:25 AM »

Uggg that is a hard one.  Pose your question to one of your transplant team..  ask what they would do.  They work in this everyday.  Do they see people pull through?

Praying for you during this hard time.

          :pray;
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natnnnat
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« Reply #2 on: December 15, 2012, 07:13:42 AM »

Gregory says keep fighting, fight it out, keep exercising.  I say, yes, talk to the transplant team about their feeling for steadying the cellular-vascular rejection.  Its amazing what they can do.  All transplants reject at first, and they work with the drugs to try and settle the situation down and balance your system.  At first, the antijection drugs are a wild ride, I hear, but I also hear that after awhile they can usually lower the dose and also that you get used to them.  Gregory says that was the case for him.  He had a year of trouble with his kidney before it settled down (trouble with ureter).

Is there a problem with waiting this one out to the end?  Will the raised Pra be a problem, for example, if you wait longer will it get higher or something?  I'm asking because, if you can wait and work with this kidney till the very end without affecting the chances for a possible next transplant, then you may as well see what this current kidney can do.  Gregory has been on strong anti-rejection drugs for 21 years (I think prednisalone and cellcept are seen as pretty strong?) and he is jumpy sometimes but says it was worth it.

To be clear about going crazy and anxiety:  side effects of the anti rejection drugs.  I've seen gregory and others describe being really emotional in all directions, and feeling pretty messy.   :grouphug; Exercise is a GREAT idea.  I really hope they can do something with the 'moderate cellular-vascular rejection'.  To me, this sounds like a window of opportunity.  :grouphug;
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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.
Relentless
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« Reply #3 on: December 15, 2012, 09:06:32 AM »

What are the serious side effects you are talking about for the rest of your life?
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Riki
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« Reply #4 on: December 15, 2012, 11:41:42 AM »

yeah, I don't get that either.. even if the kidney worked great, with no issues, you'd have to take the antirejection drugs for the rest of your life
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
GoingThere
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« Reply #5 on: December 15, 2012, 12:20:35 PM »

The difference is that regular antirejection drugs target specific white cells - t cells. Okt3 and more powerful antirejection drugs eliminate all white cells, which is far more dangerous.
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1995 - kidney biopsy - IgA
2002 - BP 220/140 - hospitilized
2004 - stage 3 of kidney failure
2005 - stagae 4of kidney failure
2009 - on the edge of stage 5
july 2010 - stage 5
14 july 2010 - catheter inserted and first D session
15 july 2010 - AV fistula created
dec. 2012 - tx with major rejection (plasmapheresis, atg, prednisone pulses)
apr 2013 - kidney function stable
jeannea
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« Reply #6 on: December 15, 2012, 05:11:04 PM »

I'm sure this is a hard decision but it can be made even worse by the solumedrol or other steroids messing with your head. I hope you have someone you can trust to talk to, just listen to your thoughts and help you talk it through.

I know that all of us have mild to serious side effects from our meds. I ended up with a severe encephalitis and lasting brain injury from an overdose of Prograf. I have to take really high doses of Valcyte because of a bad problem with CMV. For me, I can (usually) accept that this is my life now. It's this or death with a lot of suffering before death. I know that I will always have these problems.

You need to make the decision that's right for you. You should be aware that both sides of this decision have risks and then you can decide.
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boswife
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us and fam easter 2013

« Reply #7 on: December 15, 2012, 05:36:08 PM »

your decission, and a big one at that,,,,,,but,, I 'feel' that i would let it go and save myself for the next one.  If you are possibly going to loose it anyway, why chance other health issues that could prevent you from possibly the kidney that will fit better into your 'system'.  I cant emagine how dreadfully awful to have to go through the fears once again, but i would hate to take your healthy self in trade for a less healthy self just to 'possibly' keep a kidney. Just some thoughts running through my head and heart.  much love and prayers...
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
okarol
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« Reply #8 on: December 15, 2012, 07:39:08 PM »

Sorry you're having a tough time - I don't know what I would do.
I do know that not everyone gets a high PRA from a previous rejection, but the doctors would be the ones to help you decide.
Best wishes that things get settled.  :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
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