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Author Topic: Transplant Eval Appt and a Treat Afterwards  (Read 1717 times)
KarenInWA
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« on: November 25, 2010, 10:08:51 PM »

I don't know where to put this, but I just felt the need to share.  My GFR is around 20 (has fluctuated from 19-22 as of late) and will be going in for my transplant eval this upcoming Wednesday (Dec 1st).  I am nervous about this appointment.  I am not looking forward to it.  It makes my upcoming kidney failure a reality.  I lead a fairly busy life.  I work FT, sometimes work a little OT, and enjoy socializing.  Sometimes I do all of that on the same day!  So, to reward myself for going to this transplant clinic appointment, I and two friends are going to enjoy the Broadway musical "Hair" at the Paramount Theater in Seattle.

Front row tickets in the pit!!!!  We'll be right there, baby!!!

"When the moon is in the seventh house
And Jupiter aligns with Mars
Then Peace will guide the planet
And Lo-ove will steer the stars"

I can't wait!!!!  :yahoo;
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Riki
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« Reply #1 on: November 27, 2010, 07:16:33 PM »

That's cool... I like that treat.. *G*
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Dialysis - Feb 1991-Oct 1992
transplant - Oct 1, 1992- Apr 2001
dialysis - April 2001-May 2001
transplant - May 22, 2001- May 2004
dialysis - May 2004-present
PD - May 2004-Dec 2008
HD - Dec 2008-present
Matt58044
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« Reply #2 on: November 27, 2010, 09:57:19 PM »

Hi Karen,

I will have to say that I was overwhelmed by my transplant eval day.  Had to go through a few different tests, though nothing big or painful.  But all the talk about the transplant and the surgery and recovery was really overwhelming.  And on top of it, they had us meet with financial counselors and a lot of that stuff was overwhelming as well.

It may seem overwhelming just because there is SO much information to take in and things to think about.  Just remember, take it one day at a time and handle one thing at a time.

One good thing is, they'll remove some uncertainty about some things.

Good luck.  :)
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #3 on: November 28, 2010, 01:14:16 AM »


I think it's great to have something to look forward to!  :clap;

The evaluation just takes time, so bring stuff to do in case you have to wait around. And write down the names of your team members in case you have questions later.

Good luck!  :cuddle;
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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
cariad
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« Reply #4 on: November 28, 2010, 08:16:19 AM »

Great idea!

I know evals can be daunting but I sense you will sail through it and enjoy Hair all the more for having put this major step behind you. Good luck, and enjoy the show!
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MooseMom
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« Reply #5 on: November 28, 2010, 07:08:31 PM »

I know this sounds odd, but I was really excited about my eval appt.  I had become so depressed just sitting around, waiting for the inevitable that when I got the go ahead for the evaluation, I was soooo ready to finally be in a position to do something POSITIVE.  I was eager to meet the people who would be helping me get a new kidney...they were all superb.  Perhaps you could look at it in a different way...you are interviewing THEM to see if THEY are the ones YOU want to work with.

A post eval treat is a great idea.  I went to the aquarium.

I'd be really interested in hearing about your appt after it's all been done and dusted.  Please post your thoughts and impressions!  It will all go really well, I'm sure.  I suspect you already know more than you realize. :cuddle;
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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."
Chris
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« Reply #6 on: November 28, 2010, 09:07:32 PM »

Karen, the evaluation part is the easiest, all the testing and surgery can be the pain in the  :sir ken;  part  :rofl; :rofl; :rofl;  I would say taking or making the time from work to do these things can be a little hectic. However look into you vacation time and sick leave options from HR if you haven't.
 
Just have your questions printed out so you can go down your list of main points to ask or find out. Take notes, bring or use your voice recorder on your phone to take recordings of meeting incase you miss something or develop a question afterwards..
 
You'll be fine.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
KarenInWA
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« Reply #7 on: November 28, 2010, 10:48:35 PM »

MooseMom - I will let you know my thoughts as soon as I can.  I agree, it's good to share one's experiences with these things!
Logged

1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
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