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Author Topic: Transplant coordinator called me  (Read 51837 times)
kitkatz
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« Reply #75 on: November 18, 2015, 03:23:15 AM »
November 17, 2015: Received the phone call today stating Kaiser transplant committee approved my file to be sent on to UCLA transplant center.  One more step forward!
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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 #76 on: November 18, 2015, 07:54:43 AM »
That's brilliant, kitkatz!!!  :yahoo;
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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 #77 on: November 18, 2015, 01:49:05 PM »
That's good news! Today is a good day!
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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.
kitkatz
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« Reply #78 on: November 25, 2015, 11:19:33 PM »
UCLA called, I have my evaluation appointment on January 25th!
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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
Vt Big Rig
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« Reply #79 on: November 26, 2015, 08:44:37 AM »
 :bestwishes;
Best of Luck.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
okarol
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« Reply #80 on: November 27, 2015, 01:25:35 AM »
Quote from: kitkatz on November 25, 2015, 11:19:33 PM
UCLA called, I have my evaluation appointment on January 25th!

That's great! Jenna is listed there, and my sister is going through the process to get listed at UCLA too.
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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
willowtreewren
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« Reply #81 on: November 27, 2015, 11:01:53 AM »
I'm looking forward to that day, too!  :2thumbsup; :yahoo; :bandance;

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. :)
kitkatz
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« Reply #82 on: January 25, 2016, 03:28:49 AM »
Today is January 25th.  We will be on our way to UCLA for transplant evaluation today.  The next hoop to jump through.  Wish us luck.
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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
kristina
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« Reply #83 on: January 25, 2016, 03:38:14 AM »
Hello kitkatz,
Good luck to you and I keep my fingers crossed for you !
Best wishes from Kristina  :grouphug;

P.S. I am "jumping" through similar "hoops" at the moment...
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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 ...
cassandra
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« Reply #84 on: January 25, 2016, 06:16:57 AM »


Good luck Kit


     :thumbup;
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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
kristina
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« Reply #85 on: January 25, 2016, 06:42:40 AM »
Quote from: kristina on January 25, 2016, 03:38:14 AM
Hello kitkatz,
Good luck to you and I keep my fingers crossed for you !
Best wishes from Kristina  :grouphug;

P.S. I am "jumping" through similar "hoops" at the moment...

Hello again, kitkatz
... I have just been informed that my "hoop-jumping" through all these uncounted barriers and "hoops"
(because of former cancer-issues), has come to an end and I (finally) have been put onto the UK-kidney-transplant-list...
... But I still have to be patient, because waiting on the kidney-transplant-waiting-list here can still take up to 3 to 4 years...
I do hope you are very lucky today with the UCLA-transplant-evaluation and I keep my fingers crossed for you !
Best wishes from 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 ...
MooseMom
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« Reply #86 on: January 25, 2016, 07:23:11 AM »
Ooooh, good luck to you.  I am eager to hear your thoughts once you've returned home.
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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."
kitkatz
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« Reply #87 on: January 25, 2016, 09:46:52 PM »
Finally made it home.  I have been up since 12 midnight at dialysis last night and finally made it home around 9:30pm.
UCLA Evaluation Notes
I think I saw four doctors today, a social worker and a transplant coordinator.  All the doctors listened to my heart and lungs.
Everyone of the said I am going to be a complicated surgical case.  I started with a Surgical Fellow,worked my way up to the nephrologist, then the fellow's surgical boss, then the main surgeon guy.
They all seemed pretty positive that if I complete a few more things, I will be sent to committee for consideration.
Hoops:
1. UCLA consult with cardiologist and pulmonalogist about heart valves, and pulmonary hypertension.
2.  A Loopogram on the urostomy so they know where things are and if the bowel used is still all clear. Probably done through Kaiser.
3. Genetic blood testing

The off to their committee to see if I get listed.


We then went to see my 106 year old Godmother and visited with her and her grand daughters.


Exhaustipated tonight.
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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
cassandra
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When all else fails run in circles, shout loudly
« Reply #88 on: January 26, 2016, 04:21:40 AM »
Hm sounds positive Kit, 3 more hoops 'only'.

Good luck, keep strong and 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
kristina
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« Reply #89 on: January 26, 2016, 04:57:24 AM »

Hello kitkatz,
I shall continue to keep my fingers crossed for you
and send you my good luck wishes
from 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 ...
MooseMom
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« Reply #90 on: January 26, 2016, 08:30:38 AM »
"exhaustipated".  That pretty much says it all!
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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 #91 on: January 27, 2016, 08:34:21 PM »
Wow! Remarkable everything and how many doctors one must go through to be listed. I am in awe of your willpower and appreciate that you share every hoop, loop and hurdle with us.
Since you're a fan, You deserve to blare some OOPS sorry forgot, it's Barry Manilow Elton John in your car. Oh heck, blare it out the windows of your house!  :guitar: 
« Last Edit: January 27, 2016, 11:18:22 PM by PrimeTimer » Logged
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.
willowtreewren
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My two beautifull granddaughters

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« Reply #92 on: January 28, 2016, 10:09:33 AM »
You CAN jump those hoops! And then...... the real wait begins.  :2thumbsup;

Godmother is 106???? Wow, I want some of those genes.  :shy;

You are on your way, Kit!

 :flower; :guitar: :cuddle; :clap;

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. :)
Deanne
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« Reply #93 on: January 28, 2016, 10:29:51 AM »
What a day you had! Will the other tests be quicker to complete?

What's the genetic testing for? It seems like that would just be a blood test, wouldn't it? If so, it should be quick to check off your list.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
kitkatz
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« Reply #94 on: January 29, 2016, 09:49:04 PM »
So UCLA called. I have cardiac and pulmonologist appointments set up for March 2nd 10:00 and 1:30 respectively.
Hopefully transplant coordinator at Kaiser has notes and can set up the loopogram for me soon.
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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
Sibella
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« Reply #95 on: January 30, 2016, 01:31:31 PM »
I had no idea about the process. It's incredibly difficult and time consuming. You are awesome and thanks for sharing your journey. Wishing you tons of patience and approval for your transplant SOON.
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November 2014 GFR 22 (diagnosed Stage IV )
January 2015 GFR 26
March 11, 2015 Kidney Biopsy
September 17, 2015 GFR 25
December 9, 2015 GFR 15
January 25, 2016 GFR 13 (Officially Stage V)
March 8, 2016 GFR 11 :(
April 7, 2016 Fistula created in dominate arm :(
April, 2016 eGFR 7
May 16, 2016 Peritoneal Catheter surgery
June 10, 2016 Started CAPD
November 7, 2019 Transplanted :)
TheLivingWater
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« Reply #96 on: January 30, 2016, 11:03:21 PM »
We hope and pray that you will successfully pass all your tests and evaluations.

We pray for your successful transplant soon.

Thanks for sharing us your story.
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kitkatz
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« Reply #97 on: February 15, 2016, 05:37:22 PM »
I called my Kaiser coordinator the other day to get updated on stuff rom the UCLA evaluation.
SO...I tell her I have appointments made with cardio and pulmonary already at UCLA and she says to me..."I need to know these things." 
I am like...."This is why I called you, to keep you updated."
Why is that my responsibility? Sigh.  I thought coordinators were supposed to coordinate.
I try to keep on top of things with these people, otherwise getting lost in the system will happen.

I have cardio and pulmonary appts on March 2.
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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 #98 on: February 16, 2016, 07:54:12 AM »
 ::) to your coordinator who apparently thinks you should be doing her job for her.

Good luck on 2 March!  I look forward to hearing the results!
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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."
Deanne
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« Reply #99 on: February 16, 2016, 10:17:20 AM »
I hope it all goes perfectly for you! March is just around the corner.

From my experience with my coordinator, I learned I needed to leave her voice messages about everything. When I scheduled things, when I completed tests, when I completed vaccinations ... And I learned that she would NOT call me back unless SHE wanted something. They seem to be frustrating people to work with. I suspect they're really just glorified paper-pushers. If we don't give them paper to push, they don't think for themselves that they need to take action.

It's probably a good idea to call her about everything anyway. If your cardio people neglect to leave her in the loop, she could leave you hanging forever, thinking that the ball is in your court. If you initiate the call and the cardio people don't send your results over, she'll know she has to follow up with them.

By the way, as soon as you finish these tests, don't be surprised if they suddenly decide they want another test that they could have told you about weeks ago. That happened to me several times. It was incredibly frustrating when I knew I could have completed Test B while I was waiting for my Test A appointment date.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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