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Author Topic: Transplant coordinator called me  (Read 51800 times)
kitkatz
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« on: May 07, 2015, 02:38:53 PM »
Here we go again. When I saw my new nephrologist she highly recommended I try for transplant again. Sigh. I do not know if I really want to do it all again but thought what the hell, give it a shot.
So today I had a phone call from the new transplant coordinator. I never really expected the call because Kaiser has been to lax about things nephrology related for me for so long.
So I now have transplant clinic class June 17.
I need surgical clearance, cardiac clearance, urology clearance,and dental clearance.  Among other things I am sure will come up.

Wish me luck. I am personally scared out of my wits to be doing this all again.
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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
Deanne
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« Reply #1 on: May 07, 2015, 03:06:50 PM »
Good luck!  :flower;

I hope it all goes smoothly for you.
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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
MooseMom
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« Reply #2 on: May 07, 2015, 03:22:33 PM »
Oh, best of luck to you!

I hope you will share your experiences with us.  I'm very eager to hear how things go for you!   :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."
PaulBC
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« Reply #3 on: May 07, 2015, 03:40:18 PM »
Good luck! Please keep us posted.
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okarol
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« Reply #4 on: May 07, 2015, 04:13:25 PM »
 :waving; I hope all goes well for 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
Bambino_Bear
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« Reply #5 on: May 07, 2015, 05:34:03 PM »
I wish you the best of luck!


 :flower;
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
SooMK
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« Reply #6 on: May 07, 2015, 05:39:52 PM »
Hope all goes well!
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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.
Zach
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« Reply #7 on: May 07, 2015, 06:44:56 PM »
I'm sure you'll pass all those tests!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
dublin
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« Reply #8 on: May 08, 2015, 06:57:27 AM »
Hi there kitkatz i hope all goes well for you i am waiting for the call from the hospital to so they can arrange things for me i wish you all the best fingers crossed for you  :bandance; :thumbup;
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jeannea
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« Reply #9 on: May 08, 2015, 09:55:42 AM »
Try to look at it in smaller pieces rather than this whole overwhelming thing. It is a lot. We're here for you.
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Rerun
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Going through life tied to a chair!
« Reply #10 on: May 12, 2015, 05:03:09 AM »
Good Luck   :flower;
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cassandra
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When all else fails run in circles, shout loudly
« Reply #11 on: May 12, 2015, 05:30:57 AM »
All the luck in the world babes

      :flower;
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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
Michael Murphy
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« Reply #12 on: May 12, 2015, 11:38:43 AM »
I stopped and lit a candle in church that this works out.
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willowtreewren
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« Reply #13 on: May 12, 2015, 12:39:01 PM »
This is great news, Kit. And you'll pass with flying colors!  :2thumbsup;

 :grouphug; :cuddle;

Thinking of you and continuing to hope for the very best.

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 #14 on: June 17, 2015, 09:46:30 PM »
Things move slowly in the Kaiser Hospital world so a month later....

I have my approval to move forward to medical testing at Kaiser 1st round of tests.
So:
blood work
chest X-ray
tb test
pap smear
mammogram
colonoscopy
clearances from pulmonary and cardiac docs
heart test
stress test
abdominal scan
electro-cardiogram

I have been in contact with internal med doc to get tests approved and referrals. 
Need to see dentist whom I have not seen a while.  I should have kept up those appointments. Sigh.

I am at a BMI of 34 just below the cutoff for BMI at transplant center.  Working out three days a week to keep things under that BMI.

So here we go again with the circus.
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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 #15 on: June 17, 2015, 10:42:04 PM »
That's VERY good news, thanks for sharing it with us! You've been such an inspiration, a lot of people here are rooting for you. I know he was talking about foreign policy but as Pres Reagan said (with my own little revision made to it) hope you have "peace through strength". Ah yes, life is like a circus. Or a carnival ride. Hope you "get the brass ring"! 
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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 #16 on: June 18, 2015, 05:27:31 AM »
We both know it is a bit of a slog to get all of the testing coordinated and then actually done, and it can really try your patience.  But you've done it before and can certainly do it again.  We're all rooting for you! :grouphug;
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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 #17 on: June 24, 2015, 10:08:38 PM »
So I have been a busy little transplant pre-evaluation patient.

DONE:
blood work- done. They took 18 tubes in only one stick.  I was amazed! 6/23/2015
chest X-ray- done 6/23/2015
electro-cardiogram- done 6/23/2015
dental clearance- done 6/24/2015  Teeth cleaned. I need a crown on one tooth.
clearances from pulmonary - clearance given 6/23/2015

TO DO:
tb test- called coordinator and have blood test for it on the books. Phone call 6/23/2015
pap smear- in contact with doctor for orders 6/23/2015
mammogram- in contact with doctor for orders 6/23/2015
colonoscopy- scheduled for Tuesday June 30.
another pulmonary function test ordered and scheduled for July 10
cardiac docs- visit scheduled for June 26
heart test- waiting on doc visit
stress test- waiting on doc visit
abdominal scan- scheduled for July 1


Just running it through the mill.
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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 #18 on: June 24, 2015, 10:22:36 PM »
Wow! That list is not for any one-stop shopping! Doubt even Martha Stewart could do ALL THAT. Thanks for sharing...Go Girl Go!  :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.
kristina
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« Reply #19 on: June 25, 2015, 02:15:16 AM »
Quote from: kitkatz on June 17, 2015, 09:46:30 PM
Things move slowly in the Kaiser Hospital world so a month later....

I have my approval to move forward to medical testing at Kaiser 1st round of tests.
So:
blood work
chest X-ray
tb test
pap smear
mammogram
colonoscopy
clearances from pulmonary and cardiac docs
heart test
stress test
abdominal scan
electro-cardiogram

I have been in contact with internal med doc to get tests approved and referrals. 
Need to see dentist whom I have not seen a while.  I should have kept up those appointments. Sigh.

I am at a BMI of 34 just below the cutoff for BMI at transplant center.  Working out three days a week to keep things under that BMI.

So here we go again with the circus.

Crikey kitkatz,
... you certainly have been very busy!
... and you continue to be busy ...  and it is all in a good cause ... !
I keep my fingers crossed for you and wish you the best of luck,
best wishes from Kristina. :grouphug;
« Last Edit: June 25, 2015, 02:16:30 AM by kristina » Logged
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 ...
Athena
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« Reply #20 on: June 25, 2015, 06:31:56 AM »
Good luck Kitkatz! I hope there will be a silver lining for you after all these tests and procedures are completed.
 :flower;
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Find Cure for CKD now! Please like my facebook page of the same name. Thank you.
Deanne
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« Reply #21 on: June 25, 2015, 07:15:39 AM »
You're ripping through them at an amazing pace!
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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
willowtreewren
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My two beautifull granddaughters

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« Reply #22 on: June 25, 2015, 08:43:49 AM »
Oh! Colonoscopy!  :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.

I'll be thinking of you!

 :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. :)
Zach
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"Still crazy after all these years."
« Reply #23 on: June 25, 2015, 07:40:25 PM »
Quote from: willowtreewren on June 25, 2015, 08:43:49 AM
Oh! Colonoscopy!  :sir ken; :sir ken; That one isn't much fun. At least the prep for it isn't. Be sure to tell them you are a dialysis patient so they have you do the kidney friendly prep.

I'll be thinking of you!

 :grouphug;

Aleta

And if they haven't mentioned it, ask for a pediatric scope.

 :cuddle;
Logged
Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Jean
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« Reply #24 on: June 26, 2015, 01:28:00 PM »
God love you Kit. You are doing so wonderfully, just getting so much done in such a short time. I wish you the very best.
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One day at a time, thats all I can do.
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