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Author Topic: Transplant coordinator called me  (Read 51815 times)
PrimeTimer
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« Reply #150 on: May 27, 2016, 01:33:48 AM »
Quote from: willowtreewren on May 26, 2016, 07:49:58 PM
:2thumbsup;

Let's get this show on the road!

Aleta

Ditto!!  :2thumbsup;
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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.
MooseMom
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« Reply #151 on: May 27, 2016, 10:17:42 AM »
Another "ditto" from me!!   :2thumbsup;
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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 #152 on: May 28, 2016, 12:42:36 PM »
I agree with you both.  Both docs, the cardio and neph know I am motivated to get on with this testing and quit screwing around with paperwork.
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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 #153 on: June 04, 2016, 06:43:32 PM »
Update:  I now have seen the cardiologist, he ordered blood work that i had done the next morning.  I have an appointment on June 16 for the heart and lung cath.  My own cardiologist will do it and I am comfortable with him and his ways.  He says he will sedate me as much as he can and give me the good drugs.  Then an appointment on July 25th to go over results with UCLA people.  Then we will see what is next in this process.
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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 #154 on: June 05, 2016, 03:24:55 AM »
Hello kitkatz,
Many thanks for the update and just to say that I wish you good luck on June 16th and July 25th !!!
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.
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                                          ...  Oportet Vivere ...
okarol
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« Reply #155 on: June 12, 2016, 10:39:37 PM »
I hope all goes well and you can finally get listed.  :grouphug;
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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
kitkatz
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« Reply #156 on: June 18, 2016, 10:48:47 AM »
The heart and lung cath on Thursday went really well. My levels are now  well below what UCLA wanted.  They wanted them below 55 and mine are at 21, 22.  I do not really know what these levels are but doctor says they are good.  Now to wait until the UCLA appointment in mid-July.  See if they still want the bubbly study and other stuff done.
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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
PrimeTimer
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« Reply #157 on: June 18, 2016, 01:51:13 PM »
Quote from: kitkatz on June 18, 2016, 10:48:47 AM
The heart and lung cath on Thursday went really well. My levels are now  well below what UCLA wanted.  They wanted them below 55 and mine are at 21, 22.  I do not really know what these levels are but doctor says they are good.  Now to wait until the UCLA appointment in mid-July.  See if they still want the bubbly study and other stuff done.

Sounds like you got thru that last hoop beautifully! Don't know what the "bubbly study" involves but hope you get your transplant so that you might enjoy some of this "bubbly"  :wine;
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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.
DialysisGoneFOREVER
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« Reply #158 on: June 18, 2016, 08:48:28 PM »
Quote from: kitkatz on June 18, 2016, 10:48:47 AM
The heart and lung cath on Thursday went really well. My levels are now  well below what UCLA wanted.  They wanted them below 55 and mine are at 21, 22.  I do not really know what these levels are but doctor says they are good.  Now to wait until the UCLA appointment in mid-July.  See if they still want the bubbly study and other stuff done.

It's great that went smoothly! Approximately how long is your wait once you get on the list?
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kitkatz
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« Reply #159 on: June 20, 2016, 04:07:52 AM »
The good Lord only knows transplant wait times.  However they did say to have a bag packed because I should be close to the top of a list somewhere due to the 17 and a half years on dialysis.  However I amnot holding my breath about being listed. So much can go wrong when a complicated case is taken to committee.  So it goes onward.
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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 #160 on: June 20, 2016, 09:28:27 AM »
Quote from: kitkatz on June 20, 2016, 04:07:52 AM
The good Lord only knows transplant wait times.  However they did say to have a bag packed because I should be close to the top of a list somewhere due to the 17 and a half years on dialysis.  However I amnot holding my breath about being listed. So much can go wrong when a complicated case is taken to committee.  So it goes onward.

You should get a trophy for surviving 17.5 years on dialysis! How is your case complicated?
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Simon Dog
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« Reply #161 on: June 20, 2016, 11:36:41 AM »
Quote from: kitkatz on June 20, 2016, 04:07:52 AM
So much can go wrong when a complicated case is taken to committee.  So it goes onward.
I think the "committee" simply decides if you are eligible to be listed in the transplant program.   I believe the actual decision to accept and plant an organ will be made by the surgeon and other MDs on the xplant team - but I suppose if you have more than 2 MDs talking it becomes a committee.
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okarol
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« Reply #162 on: June 26, 2016, 12:34:26 AM »
Do you know your antibody level?
Yeah, with all your time for good behavior, your should get transplanted quickly, once they ok you.
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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
kitkatz
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« Reply #163 on: June 26, 2016, 04:11:22 PM »
They have not done the major blood work yet due to me needing other consultations.
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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 #164 on: July 05, 2016, 09:55:00 PM »
Cardiologist report today! Heart levels are all okay and am healed from the catheterizations. He is pleased with my weight loss progress and I recommended this program highly to him. I am okayed to exercise again. Today I am doing the desk bike in intervals. I am pleased.

Next UCLA appointment July 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
cassandra
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« Reply #165 on: July 07, 2016, 01:06:30 PM »
Good to hear girl

    :cheer:         :cheer:         :cheer:


Love, luck and strength, 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
PrimeTimer
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« Reply #166 on: July 07, 2016, 06:16:52 PM »
Quote from: kitkatz on July 05, 2016, 09:55:00 PM
Cardiologist report today! Heart levels are all okay and am healed from the catheterizations. He is pleased with my weight loss progress and I recommended this program highly to him. I am okayed to exercise again. Today I am doing the desk bike in intervals. I am pleased.

Next UCLA appointment July 25th.

This is great news! It's about time you got good news, seems your hard work and willpower is paying off. Strength seems to be an ability hard to achieve sometimes and greatly appreciated when it is shared.   
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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 #167 on: July 16, 2016, 07:22:12 PM »
Another transplant coordinator phone call.  This time for test appointments that should have been made last month not the week before I go to see UCLA doctors. 
SO now I have Monday- dialysis 2-9pm, Tuesday- Lung Scan 12:30, Wednesday-  Dialysis 2-9pm,Thursday- Bubble Study cardiogram 11 a.m., Saturday- Dialysis 10 a.m., Monday UCLA 2p.m., Tuesday Dialysis10 a.m..
I may go nuts next week.
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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
PrimeTimer
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« Reply #168 on: July 17, 2016, 02:03:13 AM »
Hope they have their act together and will be ready for you and any glitches avoided. Tell them the showgirl must go on!  :guitar:

 A little Bette Midler...

https://youtu.be/xT-DdBrcVuA
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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.
DialysisGoneFOREVER
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« Reply #169 on: July 17, 2016, 08:58:38 PM »
I empathize with you kitkatz. I've been through the crazy testing too and sometimes it almost feels like they do SO many tests to FIND a reason to turn you DOWN! You get the feeling THEY are paranoid something will go wrong!!
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kitkatz
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« Reply #170 on: July 21, 2016, 01:35:29 PM »
Tests this week. Geez I hope I passed them all.
Tuesday I did a lung scan.  It was interesting and the crew that did it was a delight.  I saw my lungs glowing on the scans, too. Cool.
Thursday I completed the bubble test in cardiology.  The nurse was pretty rough getting an IV in but she got it the first time.
So now on to Monday's UCLA appointment.
Hopefully they send me back to the transplant committee with an okay from them.
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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 #171 on: July 21, 2016, 06:26:05 PM »
Some transplant centers do everything they can to find a reason to turn you DOWN! I hope you have a good and compassionate Tx center then you should be fine.
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kitkatz
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« Reply #172 on: July 25, 2016, 08:25:03 PM »
I just got back from UCLA pulmonary appointment. They have given clearance.  Now back tot he transplant team and see what they want and need me to do next.
I will call the coordinator tomorrow.
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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
okarol
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« Reply #173 on: July 25, 2016, 09:48:13 PM »
 :2thumbsup;
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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 #174 on: July 29, 2016, 03:29:11 PM »
Quote from: kitkatz on July 25, 2016, 08:25:03 PM
I just got back from UCLA pulmonary appointment. They have given clearance.  Now back tot he transplant team and see what they want and need me to do next.
I will call the coordinator tomorrow.

Anything new to report???
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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."
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