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Author Topic: Transplant coordinator called me  (Read 51812 times)
PrimeTimer
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« Reply #50 on: July 24, 2015, 12:09:33 AM »
Sleep, eat and be merry this weekend. You deserve it!  :popcorn;
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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.
willowtreewren
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« Reply #51 on: July 29, 2015, 06:54:30 AM »
Wow! Everything is moving along!  :clap;

You'll get 'er done!

 :grouphug;

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 #52 on: August 05, 2015, 04:51:38 PM »
Saw the cardiologist today. He has cleared me for possible transplant. He says my heart is strong, however I do still have the sticky valve, but it is moderate.  Nothing that will prevent transplant as far as he s concerned. See me in a year or when needed.
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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 #53 on: August 05, 2015, 04:55:03 PM »
Good News  :bandance; :bandance; :bandance;
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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 #54 on: August 06, 2015, 01:08:28 AM »
 :flower; Great!!  :-*
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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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My two beautifull granddaughters

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« Reply #55 on: August 06, 2015, 12:07:08 PM »
Woo hoo!  :2thumbsup; :yahoo; :thumbup;

Keep the good news coming, gramdma!  :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. :)
kitkatz
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« Reply #56 on: September 17, 2015, 01:28:58 PM »
I saw the infectious disease doctor about the TB test positive results.  He put me on INH and B6 for nine months as precautionary measures for transplant team consideration.
Seems ridiculous to me, but of they want it, I will do it.
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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
Angiepkd
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« Reply #57 on: September 17, 2015, 06:38:26 PM »
Keep on keepin' on!  You can do it!   :beer1;
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
Deanne
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« Reply #58 on: September 21, 2015, 07:46:39 AM »
I had to do the same - IHH + B6 for 9 months. They didn't delay transplant because of it though. My transplant was about 4 months into the protocol. I hope this is the last hurdle you need to cross.
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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
PrimeTimer
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« Reply #59 on: September 21, 2015, 07:15:17 PM »
I like your positive attitude. It's not necessarily something we learn from a book but maybe a teacher...(you).
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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 #60 on: October 07, 2015, 09:18:25 PM »
I have completed all testing. Just need the final meeting with the nephrologist at Kaiser and then it is off the the Kaiser transplant committee to see if I can move onward to a transplant hospital.  I will probably chooe UCLA transplant centers.
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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 #61 on: October 08, 2015, 04:26:31 AM »
Sounds like it is moving along ....... Best of Luck and God Speed.
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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
kitkatz
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« Reply #62 on: October 28, 2015, 06:35:53 PM »
I had the appointment wit the nephrologist today 10/28/2015.
So now my packet of information goes to Kaiser's transplant committee on Friday and we go from there.
I signed paperwork to send stuff out to UCLA, so we shall see what they want or need to proceed.
I have a relative who lives in LA about 15 minutes from UCLA who will let us crash at their house on nights before appointments. So we will at least not have to beat traffic into LA from Rialto.
I also have relatives in Van Nuys if we over stay the welcome with one relative.

So the waiting game begins.
Logged


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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #63 on: October 28, 2015, 11:59:13 PM »
My sister started dialysis about a month ago and is in the process of getting wait listed at UCLA. Her first in-person appointment is tomorrow.
I hope all goes well for you 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
MooseMom
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« Reply #64 on: October 29, 2015, 03:01:47 AM »
I am SO rooting for you!!
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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 #65 on: October 29, 2015, 07:06:57 AM »
Quote from: kitkatz on October 28, 2015, 06:35:53 PM
I had the appointment wit the nephrologist today 10/28/2015.
So now my packet of information goes to Kaiser's transplant committee on Friday and we go from there.
I signed paperwork to send stuff out to UCLA, so we shall see what they want or need to proceed.
I have a relative who lives in LA about 15 minutes from UCLA who will let us crash at their house on nights before appointments. So we will at least not have to beat traffic into LA from Rialto.
I also have relatives in Van Nuys if we over stay the welcome with one relative.

So the waiting game begins.

Looks like you've covered all the bases and have done everything you can. Good to know that a kidney will have a "good home" with you some day. Obviously that "puppy" will be well taken care of!
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 #66 on: October 29, 2015, 08:04:13 AM »
 :2thumbsup; :2thumbsup; :2thumbsup;

Let's hope the wait is not long!

Aleta
Logged
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 #67 on: October 29, 2015, 02:13:48 PM »
The coordinator and doctor were:  'Oh you will go to the top of the list with your time on dialysis."  I laughed at them both. I said we all know it does not work that way
I go to the top of the time list, but there are other mitigating factors involved in getting an O+ kidney..
« Last Edit: October 31, 2015, 05:26:46 PM by kitkatz » Logged


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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #68 on: October 30, 2015, 05:28:31 PM »
You can take O+ and O- :)
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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
PrimeTimer
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« Reply #69 on: October 30, 2015, 11:18:18 PM »
Quote from: okarol on October 30, 2015, 05:28:31 PM
You can take O+ and O- :)

Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...
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.
Deanne
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« Reply #70 on: November 02, 2015, 07:33:16 AM »
I was told the + and - don't matter for transplant.
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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
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #71 on: November 03, 2015, 12:32:50 AM »
Quote from: Deanne on November 02, 2015, 07:33:16 AM
I was told the + and - don't matter for transplant.

Right!

Quote from: PrimeTimer on October 30, 2015, 11:18:18 PM
Quote from: okarol on October 30, 2015, 05:28:31 PM
You can take O+ and O- :)

Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...

Recipients with blood type O... can receive a kidney from blood type O only
Recipients with blood type A... can receive a kidney from blood types A and O
Recipients with blood type B... can receive a kidney from blood types B and O
Recipients with blood type AB... can receive a kidney from blood types A, B, AB and O
Logged

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
PrimeTimer
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« Reply #72 on: November 03, 2015, 10:15:55 AM »
Quote from: okarol on November 03, 2015, 12:32:50 AM
Quote from: Deanne on November 02, 2015, 07:33:16 AM
I was told the + and - don't matter for transplant.

Right!

Quote from: PrimeTimer on October 30, 2015, 11:18:18 PM
Quote from: okarol on October 30, 2015, 05:28:31 PM
You can take O+ and O- :)

Is that true? kitkatz can take 0+ and 0- ? When it comes to type 0 they can take both? Or am I missing an inside location joke and had to be there type of thing...

Recipients with blood type O... can receive a kidney from blood type O only
Recipients with blood type A... can receive a kidney from blood types A and O
Recipients with blood type B... can receive a kidney from blood types B and O
Recipients with blood type AB... can receive a kidney from blood types A, B, AB and O
Thanks for answering that. I haven't quite learned about all the complicated details and hurdles involved in the transplant process. My husband isn't wanting a transplant but nonetheless, we try learning what we can about it.
 
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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.
Simon Dog
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« Reply #73 on: November 03, 2015, 11:47:37 AM »
Back when BEK Transplant (Shanghai) was advertising prisoner kidneys on the net, they were quoting a $5K surcharge for type O units.
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okarol
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« Reply #74 on: November 06, 2015, 09:49:43 PM »
Quote from: kitkatz on October 29, 2015, 02:13:48 PM
The coordinator and doctor were:  'Oh you will go to the top of the list with your time on dialysis."  I laughed at them both. I said we all know it does not work that way
I go to the top of the time list, but there are other mitigating factors involved in getting an O+ kidney..

Not much, I am pretty sure there aren't a lot of 17 year dialysis patients on the wait list.
Logged

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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