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Author Topic: Waiting to get on the list  (Read 13896 times)
willieandwinnie
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« Reply #50 on: May 07, 2008, 04:56:51 PM »

rookiegirl, all the best to you and I hope your evaluation goes without a hitch.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #51 on: May 07, 2008, 05:20:12 PM »

 :thumbup; Good luck - please let us know how it goes!
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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 #52 on: May 07, 2008, 09:25:31 PM »

Good luck and go for 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
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #53 on: May 08, 2008, 01:46:12 PM »

Good luck, you'll do fine! As for the meds, if you really must take them, I'd do it and suffer for a little while with nausea. What's a little nausea compared to a transplant and no dialysis?! Take some Tums or something if you need to.
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I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
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Twitter.com/NKFKidneyWalker
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www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
rookiegirl
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« Reply #54 on: May 08, 2008, 05:19:08 PM »

Well, I'm finally back home. It took forever, but it was all worth it I hope. We check-in @ 7am and I was discharge @ 6pm.  Almost 12hrs. Here's what happen:

~Waited in the lobby for 1hr. before they check me in.

~Waited in the lobby again for 30mins. for a transporter to take me to my room.

~While in my room, nurse took 20 tubes of blood (OMG!), blood pressure (low than normal), heart rhythm.

~Waited in the room for 1hr. Transporter took me down.

~Had chest x-ray and C.T. scan

~Waited in a holding room for 30mins. prior to going back to my room.

~Waited in my room for almost 4hrs. Transporter took me down.

~Had heart ultrasound and heart stress test. Walk and eventually ran on the threadmill for 4-5 mins. Jumped quickly back in the bed so they can do ultrasound of my heart while my pulse was over 155.

~Waited in a holding room for 30mins.

~Had abdomen ultrasound of my kidneys, lungs, spleen, bladder, abdominal muscle/tissues. The lady let me see my catheter tube.  It was interesting.  Now I understand why it hurt so bad when I drain fluid out at the end. My catheter sucks again my peritoneal wall. Very interesting.

~Waited in a holding room for another 30mins. As I was waiting for a transporter to take me back to my room, there was an elderly lady on a stretcher beside me. She grabbed my hand and she wanted me to feel her heart. I couldn't reach her chest. A nurse came by to talk to the elderly lady. Afterwards, she quietly lean on me to tell me that the lady has Mrsa. So the nurse wheeled me to the bathroom so I can wash my hands. I told the nurse that I'm a dialysis patient.  I was so scared. I washed my hands in hot water and used Purell.  I pray to God I did good enough washing to not catch it. I can't understand why they would put the patients that close together. You never know if that person is contagious. I'm not angry at the elderly lady. She was so sweet. I'm angry with the hospital staff. They should be more cautious than that.

~Transported me back to my room.  Waited for 2hrs. to see if the Dr. need to see me before my discharge. After waiting for that long, nurse came in and said the Dr. didn't need to see me. Finally I was discharged.

Just a reminder, I had nothing to eat or drink since 6pm the night before. I was so hungry and soooo thirsty.  I was really starting to feel nauseated and shaking.  But, I didn't want to complain because I know this test is all worth it. I really hope they don't find anything with me that would not qualify me for a transplant because then all of what my husband and I did today would be for nothing.  Speaking of husband, he was such a trooper.  He too didn't eat or drink. He waited patiently through all of it.

Now, I'm waiting for results. I hope they don't take too long to let me know.  Thank you for allowing me to share.  I hope this was informative to those waiting for a Transplant Work-up.

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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
Sunny
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Sunny

« Reply #55 on: May 09, 2008, 03:31:40 PM »

Sounds like a very long day, but you made it through.
I hope all your tests provide the results you need to be on the transplant list.
Very strange about the little old lady with a contageous disease. You would think more care would be taken with her
with regards to the possiblility of spreading it to others. Best of luck to you.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
willieandwinnie
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« Reply #56 on: May 09, 2008, 03:38:55 PM »

rookiegirl, you poor thing. Isn't it terrible that they leave you parked in places for so long. I'd be raising hell about them leaving that lady there that had MRSA, good Lord, what were they thinking.  :banghead; I hope you hear something soon. I'd call the transplant coordinator at the end of next week and ask her if there is anything else that you need to have done. Have a wonderful weekend and tell your husband that I think he is a hell-of-a-guy for staying with you the whole time. There is nothing worse then waiting.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #57 on: May 09, 2008, 04:18:08 PM »

Whew! It sounds like a very tough day! When Jenna did all of those appointments it took most of the day, but it was outpatient so we went to lunch in between. Then at the end of the day they said it was an hour wait for the xray, so I said no thanks, we will come back another day, which we did. You hubby is a cool guy in my book!
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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
rookiegirl
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« Reply #58 on: May 16, 2008, 03:22:51 PM »

FINALLY!!!! I received a phone call this afternoon from the transplant coordinator.  I am officially ACTIVE on the Transplant List.  :yahoo; :yahoo; :yahoo; :bandance; :bandance; :bandance;.

I'm so excited.  All the fear and all the "what ifs" are gone for now.  I know this is a whole new ball game for me.  But after waiting 7 months, and going through all the obstacles on getting there, it finally came.  Thank God.
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #59 on: May 16, 2008, 03:39:21 PM »

 :clap;  :2thumbsup; :yahoo; :clap; :2thumbsup; :yahoo;

That's great! Congrats!
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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
willieandwinnie
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« Reply #60 on: May 16, 2008, 04:00:03 PM »

rookiegirl  :yahoo; That's wonderful news. Hope you get that call fast.  :bandance;
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monrein
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Might as well smile

« Reply #61 on: May 16, 2008, 04:53:53 PM »

Congrats .  There's one big hurdle down.  Hope things continue to go well for you.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
xtrememoosetrax
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« Reply #62 on: May 16, 2008, 04:55:38 PM »

Wow! Great news! :2thumbsup; :clap;
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Living donor to friend via 3-way paired exchange on July 30, 2008.

www.paireddonation.org
www.caringbridge.org/visit/marthahansen
Laurie
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May 13, 2008

« Reply #63 on: May 16, 2008, 07:18:40 PM »

That' great news. I hope you get the call soon  :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
Psim
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« Reply #64 on: May 17, 2008, 09:45:06 AM »

Yay RookieGirl!!! You did it!!!! BTW, I'm so impressed with your husband not eating/drinking along with you during your long long day of tests-- what a support!
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kellyt
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« Reply #65 on: May 18, 2008, 05:38:17 AM »

Wonderful news, Rookiegirl!   I remember getting my blood drawn.  I think they took either 12 or 16 tubes of blood and I thought that was a lot!  But 20?????  Did you feel woozy afterwards?

Congrats!   :beer1;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
donnia
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me and my donor Joyce

« Reply #66 on: May 18, 2008, 09:24:36 AM »

YAY!!!  Yeah, I remember getting my blood drawn too.... 17 vials .... no fun... sure would be nice if they offered us some orange juice or a cookie afterwards huh   :rofl;
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
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