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#749894 - 06/08/07 06:39 PM
Re: Hold on to your hats...it's an update!
Truffle Royale
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Power Poster
Joined: May 2002
Posts: 6,260
NW IL
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Oh, yeah...I forgot... Back in December this was my post...
Friday, December 01, 2006 08:20 AM CST
Clinic update... We had clinic yesterday and all was well. Natalie's labs look fantastic!! Just beautiful. It is hard to believe that with them looking this good, that we are re-listed for another transplant.
But she can't live forever with the tube in. She needs to bathe like all the other kids, and be able to swim. She needs to learn to pull up and down her pants, without worrying about yanking the tube out of place, or worse out completely.
She needs to not have a continuous open sore on her tummy.
And so, even with perfect liver labs, she needs a new liver. A liver that will drain bile on its own, that will create healthy non-clumpy bile. A liver that will let her live.
And In October I posted:
Thursday, October 19, 2006 09:25 AM CDT
This is hard...
This is a hard update to write. I've been sitting on this news for 2 days now, not saying anything. I hate taking you all on our roller coaster, really I do.
I mentioned in my last update that when we got home Tuesday I called Joan, Natalie's transplant coordinator. What I did not mention to you all was part of the conversation.
Dr. Superina (who, Natalie will tell you, "Has a hurt foot" - he just had surgery on his Achilles tendon) took a look at last week's IR study and the study from this Tuesday. Dr. Superina, the man that didn't want to give up on this liver. Dr. Superina is ready to re-transplant.
And I think that I am too.
A shunt would be too hard.
After talking to Dr. Kim (one of the IR doctors) I learned that these mesh metal shunts are typically used for cancer patients to improve quality of life when there are few options left. The shunts usually fail within 6 months. Since the liver would grow around the shunt, if there was a problem with it, surgery of the liver would be necessary to remove it.
And the study from this week is showing that her bile ducts are doing very little draining on their own anymore, anyway.
From what we know now, she will most likely be re-activated on the list sometime next week.
Whatever the reason, surely a miracle...her team is now saying that they may be able to pull the tube.
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#749919 - 06/08/07 06:47 PM
Re: Hold on to your hats...it's an update!
QCL
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Diamond Poster
Joined: Sep 2002
Posts: 1,117
On the road...
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Becca, I'm sure that means a world of difference for Natalie. I continue to keep you guys in my prayer and quite regularly check Natalie's website for updates.
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Michelle CRCM
"What would you attempt to do if you knew you could not fail?" ~ unknown
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#749925 - 06/08/07 06:50 PM
Re: Hold on to your hats...it's an update!
Truffle Royale
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Power Poster
Joined: Jan 2003
Posts: 3,070
Oklahoma
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I'm sorry for the waiting period your family has to go thru and the decisions you had to make. Prayers, best wishes and lots of good thoughts are shooting at you from N, E, S and West!
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Just working here until I get my letter from Hogwarts.
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#753020 - 06/14/07 02:29 PM
Re: Hold on to your hats...it's an update!
someone else
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Power Poster
Joined: Oct 2001
Posts: 5,564
Clintonville, WI, USA
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So does this mean she may not need another transplant, that the current liver may be starting to function properly?
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#753272 - 06/14/07 04:45 PM
Re: Hold on to your hats...it's an update!
QCL
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Power Poster
Joined: Oct 2001
Posts: 5,564
Clintonville, WI, USA
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I am praying BIG TIME for that!
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Member of the National Sarcasm Society - like we need your support!
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#753404 - 06/14/07 06:05 PM
Re: Hold on to your hats...it's an update!
QCL
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Power Poster
Joined: Sep 2004
Posts: 4,241
middle of the country
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Loads and loads and loads of prayers for "an open duct"!!!! Have her picture in my office so I can sent one up whenever I see her. From our lips to God's ear!!
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Treading water in a hurricane
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#753769 - 06/14/07 10:14 PM
Re: Hold on to your hats...it's an update!
corkygirl
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Diamond Poster
Joined: May 2003
Posts: 2,053
Hawaii
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Loads and loads and loads of prayers for "an open duct"!!!! prayers from Hawaii
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#753788 - 06/14/07 10:47 PM
Re: Hold on to your hats...it's an update!
wavewatcher
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Power Poster
Joined: Jul 2006
Posts: 3,889
CA
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All my good thoughts and prayers are coming your way!
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He who sings scares away his woes. ~Cervantes
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#753849 - 06/15/07 12:34 PM
Re: Hold on to your hats...it's an update!
Sing A Little
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Power Poster
Joined: Nov 2001
Posts: 7,988
FINALLY ABOVE the gnat line
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Prayers coming your way from Georgia. Hope the duct stays open and the transplant isn't needed. Little one (an parents) needs a rest from all of this.
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"Once you learn to read, you will be forever free." - Frederick Douglass
My Opinion Only.
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#753902 - 06/15/07 01:48 PM
Re: Hold on to your hats...it's an update!
waldensouth
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10K Club
Joined: Aug 2002
Posts: 34,318
under the Lone Star
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God Bless you and your family MOPN, from another transplant family --
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#760992 - 06/26/07 04:44 PM
Re: Hold on to your hats...it's an update!
Pale Rider
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Power Poster
Joined: Aug 2002
Posts: 3,275
Quadrupletville, Texas
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MOPN, I hope you can update us soon on the beginning of your summer..
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"I don''t make jokes. I just watch the government and report the facts." - - Will Rogers (still relevant today)
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#760994 - 06/26/07 04:44 PM
Re: Hold on to your hats...it's an update!
Pale Rider
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Power Poster
Joined: Aug 2002
Posts: 3,275
Quadrupletville, Texas
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MOPN, I hope you can update us soon on the beginning of your summer..
_________________________
"I don''t make jokes. I just watch the government and report the facts." - - Will Rogers (still relevant today)
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#760995 - 06/26/07 04:44 PM
Re: Hold on to your hats...it's an update!
Pale Rider
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Power Poster
Joined: Aug 2002
Posts: 3,275
Quadrupletville, Texas
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MOPN, I hope you can update us soon on the beginning of your summer..
_________________________
"I don''t make jokes. I just watch the government and report the facts." - - Will Rogers (still relevant today)
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#761944 - 06/27/07 01:11 PM
Re: Hold on to your hats...it's an update!
QCL
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Power Poster
Joined: Oct 2001
Posts: 5,564
Clintonville, WI, USA
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Hopehopehopehopehopehopehope....HOPE!
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Member of the National Sarcasm Society - like we need your support!
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#761953 - 06/27/07 01:19 PM
Re: Hold on to your hats...it's an update!
Nanwa
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Power Poster
Joined: Nov 2005
Posts: 5,112
In hades.
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Praypraypraypraypraypraypray...PRAY!
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I never finish anyth
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#762071 - 06/27/07 02:27 PM
Re: Hold on to your hats...it's an update!
P*Q
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Power Poster
Joined: Aug 2002
Posts: 3,275
Quadrupletville, Texas
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Ditto on all the above comments.....re: July 19th
_________________________
"I don''t make jokes. I just watch the government and report the facts." - - Will Rogers (still relevant today)
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#762541 - 06/27/07 06:49 PM
Re: Hold on to your hats...it's an update!
QCL
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10K Club
Joined: Mar 2006
Posts: 10,392
Curled up by the fire...
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Good thoughts coming your way, MOPN!!! Hope all goes well for your beautiful daughter!!!
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Take responsibility for your life.
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#764328 - 06/28/07 10:18 PM
Re: Hold on to your hats...it's an update!
Mrs. Rizzo
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Power Poster
Joined: Mar 2004
Posts: 6,172
Further South than I wanna be.
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Got my fingers and toes crossed.
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Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference.
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