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Author Topic: Kidney transplant takes a tragic turn  (Read 4136 times)
RichardMEL
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« on: March 01, 2011, 10:20:32 PM »

Kidney transplant takes a tragic turn
Adrian Lowe
March 2, 2011 - 12:56PM

The partner of a woman who died following a kidney transplant has told an inquest she wants answers as to whether her partner was properly informed about the process.

Rae Moran this morning told the Coroners Court of the "buzz" she felt when told in late 2006 that her partner Karen Wilkinson could receive a kidney.

"It was a real buzz to have this opportunity for a new life," Ms Moran said.
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But days after her transplant, Ms Wilkinson died, as did two other women in the same month who received a kidney and a liver from the same donor.

The coronial inquest into the January 2007 deaths of Ms Wilkinson, 43, Gurpal Sandhu, 64 (who received the liver), and Carmellina Sirianni, 63, is being conducted on the basis that the donor, Jovo Vranjesevic, was carrying arenavirus, a recently detected infection.

Ms Moran said today that it appeared the kidney Ms Wilkinson received was "significantly compromised" and she wanted to know whether the outcome would have been different had the virus had been detected earlier.

She said that when Ms Wilkinson became sick and was hospitalised after the transplant, "we thought it was Karen’s body doing stuff again - but it wasn’t her fault at all".

"Karen was just incredibly unlucky," Ms Wilkinson said.

Ms Moran said there had been no discussion with her or her partner about Mr Vranjesevic’s previous contraction of Hepatitis B.

"If it was a borderline kidney and she knew about it, she might have thought twice about it," she said.

"My primary question is ... what risks with Hepatitis B were discussed with Karen."

Mr Vranjesevic died of a cranial haemorrage days after returning to Australia in late 2006.

The inquest before coroner Audrey Jamieson continues.

http://www.theage.com.au/victoria/kidney-transplant-takes-a-tragic-turn-20110302-1be48.html
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
YLGuy
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« Reply #1 on: March 01, 2011, 10:31:41 PM »

Richard, you scared the living heck out of me.  I can't believe you would post something with this title.  Thank goodness it is not about you.
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Bajanne
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« Reply #2 on: March 01, 2011, 10:39:29 PM »

Richard, you scared the living heck out of me.  I can't believe you would post something with this title.  Thank goodness it is not about you.
I totally agree!
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Jean
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« Reply #3 on: March 01, 2011, 11:27:15 PM »

Yeah, me too. Interesting article tho, even tho it was scary.
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One day at a time, thats all I can do.
RichardMEL
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« Reply #4 on: March 01, 2011, 11:56:06 PM »

Sorry guys!!!

 :shy;

It is in the news articles section so I hoped it would be obvious it wasn't about me!!!! but thank you so much for noticing who posted it and worrying!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
sammiejo23
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« Reply #5 on: March 01, 2011, 11:57:12 PM »

Do not do that again. Ha.  :pray;
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01/05/2011-Full Right Nephrectomy (Malignant Tumors)
01/24/2011-Permacath Placed; Dialysis Started
01/28/2011-Fistula Placed
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billybags
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« Reply #6 on: March 02, 2011, 04:06:51 AM »

Shi*   Richard I thought it was about you.  It is so scary what I read.
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willowtreewren
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« Reply #7 on: March 02, 2011, 04:26:53 AM »

Heart in the throat moment, Richard. Bad boy!!!!

 :o :o :o :o
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
WishIKnew
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« Reply #8 on: March 02, 2011, 05:25:13 AM »

So, what does this mean for those of us waiting for transplant.  What should I know about Hep B or what should I ask about the kidney being offered?  Is there a way to prevent this kind of thing?  I'm terrified.  What if the thing I'm waiting for a hoping for kills me in the end?


And, may I add that I, too, am glad this is not about you, Richard.  Tragic nonetheless!
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KarenInWA
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« Reply #9 on: March 02, 2011, 05:41:22 AM »

From a thread in the Transplant Stories Section - Something to Carry in Your Wallet!!!

1 - What is the antigen match with me? (also ask about the antibody match)
2 - What is the cold time when I am called & location? (i.e. translantes into travel time to get to my hospital)
3 - Cause of death?
4 - Donor's medical history?
5 - Donor's Age?
6 - Is this a ECD - Extended Criteria Donor? (if you have agreed to this type of donor)
7 - Has the donor been tested for hepatitis and AIDS?
8 - Is the donor positive for CMV or EBV?
9 - Is there any history of recreational drug use or substance abuse?
10 - Am I the first recipient up or a back up?

http://ihatedialysis.com/forum/index.php?topic=2799.0

Special thanks to okarol for posting that important list of questions!

Be Informed!!!

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
RichardMEL
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« Reply #10 on: March 02, 2011, 06:32:06 AM »

Again I'm really sorry for frreaking people out. It's so nice you all care *blush* I just thought I would actually post a news item for a change (I am sure Karol fell off her chair that it wasn't her!!!  :rofl;) since it was on the front page of our major newspaper's website. I honestly didn't imagine that reaction.

Just a note on the list of what to ask etc. In the US it may be different, but here I was basically told nothing. Now I didn't have the list in front of me, but I tried to ask a number of those questions and the responses I got were either "I don't know" or "I can't tell you" (?!!) which annoyed me somewhat but what can you do? With mine there was quite a time panic it seemed, and they were all like let's do it :rofl;. Only after the transplant, for example, was I informed that it was a CMV+ kidney. Now would I have said no if they told me up front? Probably not, but still it would have been nice to know. I got given the "privacy" excuse which, at least in this country seems to be a general catch all excuse for just about anything. I was thinking "The donor's dead.. how can their privacy be invaded any further by telling me the medical status of the bloody kidney? It doesn't affect them or their family in any way and doesn't give ME any information about them personally!" - I didn't quite say that to the people I was dealing with at the time, but I wasn't exactly happy.

So, really, I had to have faith that it would work out.. and if it didn't (doesn't) then I would have to face that when the time came.

Although there is one key difference that I understand between our system and the typical US one (I could be wrong of course)... basically I understand in the US they match you and call you offering a kidney and you can decide yay or nay. In Oz, they offer the kidney to your *transplant team* - as in the doctors basically make a decision on your behalf. For example, with the CMV+ kidney, I was told that they decided to OK it because I had a CMV test in 2003 and it was +ve - of course they later told me I *also* had one in 2009 which supposedly was -ve, which makes NO sense whatsoever to my mind. They couldn't explain that, either.

So anyway I basically wound up having faith that the medical experts who I, as a patient, entrust to make the best decision with my interests at heart, made the call. It would have been nice to have more information when I got the call though.

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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Sugarlump
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« Reply #11 on: March 06, 2011, 10:05:10 AM »

I only found out that my transplanted kidney was CMV+ by reading my file when they'd left it on my hospital bed.
So in England not only do you not get told before, neither do you necessarily after.
But what the heck is arenavirus and are kidneys (for transplant) routinely screened for it?
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
boswife
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us and fam easter 2013

« Reply #12 on: March 06, 2011, 10:57:20 AM »

I will go back now and read your article.......... after telling you HOLLY CRAP!!  I barly had time to catch my tearing eyes before realizing it wasnt you.  How horrably sad for those who 'did' loose, but Richard, your "ours" and that makes it harder to take..  Now, i've caught my breath and emotions,,, i'll go read on...  Dang your carred about by a whole lot of people Richard... pretty cool huh  :2thumbsup;
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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
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« Reply #13 on: March 06, 2011, 11:17:03 AM »

The first kidney I got was CMV+ too...I did not have CMV at the time. DId they tell me no they did not but I was a minor at the time...did they tell my mother I don't think so either.

Anyway this is another reason transplantation is risky with cadaveric kidneys. When I was going through the transplant screening to get on the waiting list I met a interesting surgeron. He was explaining to me extended criteria cadavers and high risk, and I was like, "Well I don't want to get a kidney and get Hepatitis or HIV or anything doc!" and he replied, "Well Rachel you can never be sure what you are getting. Do we ever really know anything for certain about cadavers health history? They could be a nun using IV drugs...you just never know."

Thanks doc...real reassuring..
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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
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« Reply #14 on: March 06, 2011, 12:17:29 PM »

I thought it was a good title, made you read, didn't it... :rofl;
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Sugarlump
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« Reply #15 on: March 06, 2011, 12:35:27 PM »

 :)

Apparently arenavirus originates in rodents and can cause various different viruses including  meningitis and scariest of all, is NOT routinely screened in organ transplants.
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
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My two beautifull granddaughters

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« Reply #16 on: March 06, 2011, 12:53:04 PM »

We were told after Carl's transplant that both he and the donor tested positive for exposure to CMV.

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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
RichardMEL
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« Reply #17 on: March 06, 2011, 11:36:31 PM »

I thought it was a good title, made you read, didn't it... :rofl;

I am compling a list of those that really love me based on the responses to this thread  >:D >:D >:D >:D >:D
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
chook
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« Reply #18 on: March 07, 2011, 12:00:05 AM »

You can add me!!!!
For the very first time ever, I scrolled down under the language that is not English - I think it's Spanish - and found . . . . . .something that made me click straight on it and find out more. Well done, Richard. Once more IHD informs and enlightens, albeit in a scary fashion.
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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!"
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