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Author Topic: Transplant coordinator called me  (Read 51802 times)
willowtreewren
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« Reply #175 on: July 30, 2016, 10:47:42 AM »
Hoping for smooth, smooth sailing from here on out!  :2thumbsup;

Aleta
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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. :)
DialysisGoneFOREVER
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« Reply #176 on: July 30, 2016, 05:18:26 PM »
Best wishes from me too!

But from personal experience I can say dealing with the Tx team can be like dealing with the devil! Sometimes you get the feeling they are looking for reasons to turn you DOWN!!  :banghead; :Kit n Stik;
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kitkatz
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« Reply #177 on: August 02, 2016, 02:38:11 PM »
My UCLA transplant coordinator takes my case to committee tomorrow!  We shall see what happens.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
MooseMom
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« Reply #178 on: August 02, 2016, 02:42:24 PM »
Oh, I'm all nervous now!  I hope you get the bestest news!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
PrimeTimer
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« Reply #179 on: August 02, 2016, 03:12:04 PM »
Hope all goes in your favor with the UCLA committee.  :thumbup;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
cassandra
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When all else fails run in circles, shout loudly
« Reply #180 on: August 04, 2016, 03:52:43 AM »
Don't know if it's been 'tomorrow' yet on your end, but how did it go?

Love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
DialysisGoneFOREVER
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« Reply #181 on: August 04, 2016, 07:51:57 PM »
I wonder what's taking so long? They told me right after the committee meeting because they make a decision at the meeting.
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kitkatz
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« Reply #182 on: August 04, 2016, 08:50:18 PM »
Well, the committee has not said yes and they did not say no, they said come in and see us about that low BP you have.  Let's see what we can see about that, then a decision will be made.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Fabkiwi06
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« Reply #183 on: August 05, 2016, 12:47:07 AM »
That's frustrating, but could be worse! Hopefully that will be a quick "fix" to get you to the list!
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surprise kidney failure - oct. 2015
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transplant list - apr. 2016
willowtreewren
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« Reply #184 on: August 05, 2016, 09:26:48 AM »
Another hoop! But at least you are still in the game.  :2thumbsup;

 :cuddle;

Aleta
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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. :)
okarol
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« Reply #185 on: August 14, 2016, 10:17:11 AM »
 :flower; Still a maybe, that's ok, keep moving forward Kit!!
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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
DialysisGoneFOREVER
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« Reply #186 on: August 14, 2016, 11:15:09 AM »
Low BP?? Usually kidney disease results in high BP!
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cassandra
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When all else fails run in circles, shout loudly
« Reply #187 on: August 14, 2016, 02:29:38 PM »
Hi DGF 'usual' and CKD don't often go together. CKD and D are also completely different. I think I know more people on D with low BP than with high BP.

Kitkatz when are you supposed to come in?

Love, strength, luck and even more patience, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
cassandra
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When all else fails run in circles, shout loudly
« Reply #188 on: August 14, 2016, 02:36:24 PM »
I just read again that you do 'nocturnal' didn't Desert Rose have that problem and it turned out to be more calcium in the bathwater or dialysate was needed?
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kitkatz
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« Reply #189 on: August 23, 2016, 10:53:13 PM »
I am already on a high calcium bath while on dialysis. I may have to go back to four hours a shot to bring th eBP up to marginal levels to get that transplant, but am waiting to see what they say
Appointment is September 8, at 2pm.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
kitkatz
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« Reply #190 on: September 08, 2016, 03:45:49 PM »
It is official my transplant case is closed st UCLA. No transplant for me due to my low bp
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
DialysisGoneFOREVER
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« Reply #191 on: September 08, 2016, 08:08:41 PM »
Quote from: kitkatz on September 08, 2016, 03:45:49 PM
It is official my transplant case is closed st UCLA. No transplant for me due to my low bp

Wow. That sucks! Are they afraid your kidney won't have sufficient blood pressure to function properly or something?? Didn't they give you any advice on how to raise it?
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cassandra
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When all else fails run in circles, shout loudly
« Reply #192 on: September 09, 2016, 01:30:42 AM »
Quote from: kitkatz on September 08, 2016, 03:45:49 PM
It is official my transplant case is closed st UCLA. No transplant for me due to my low bp

I feel for you  Kitkatz

    :grouphug;


Lots of love, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
okarol
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« Reply #193 on: September 09, 2016, 01:31:12 AM »
Quote from: kitkatz on September 08, 2016, 03:45:49 PM
It is official my transplant case is closed st UCLA. No transplant for me due to my low bp

well that's awful news  ???
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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
kristina
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« Reply #194 on: September 09, 2016, 03:15:25 AM »
Quote from: kitkatz on September 08, 2016, 03:45:49 PM
It is official my transplant case is closed st UCLA. No transplant for me due to my low bp

I am very sorry kitkatz ... but ...  perhaps something can be done to bring your BP up a little?
I keep my fingers crossed and send you my very best wishes,
Kristina. :grouphug;
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
SooMK
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« Reply #195 on: September 09, 2016, 05:18:30 AM »
I'm so sorry.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
willowtreewren
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My two beautifull granddaughters

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« Reply #196 on: September 09, 2016, 10:24:08 AM »
Oh dear, Kitkatz.
I know this is devastating news. Nothing I can say or do will serve to make it any better. I wish it could.

Sending you....  :grouphug; :cuddle; :grouphug; :cuddle;

If you can think of anything that we can do to help, please let us know.

Aleta
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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. :)
DialysisGoneFOREVER
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« Reply #197 on: September 09, 2016, 11:40:49 AM »
Have you considered Scripps? Okcarol is an expert & she says they're great.
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MooseMom
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« Reply #198 on: September 09, 2016, 12:16:10 PM »
What?  That's it?  Is there nothing more to be done? 

Gosh, I wish I knew what to say.  I'm sorry.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
DayaraLee
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« Reply #199 on: September 09, 2016, 01:32:11 PM »
Kitkatz, I've been following your story here, and I'm just stunned that it seems to end like this. Like some others have asked, I have to wonder if they will reconsider if your BP can be brought up? This just sucks and is awful. You've spent so much effort and time on this process. I'm so sorry.
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Husband Dx - CKD Stage 3, Diabetes Type II, Hypertensive, Stubborn...

"What is love? Love is the absence of judgment."  ~Dalai Lama
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