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Author Topic: Amanda got the call.. The day before my wedding  (Read 78950 times)
Falkenbach
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« Reply #300 on: October 06, 2007, 07:07:34 PM »

Just wanted to echo what everyone else has said. The fear and distress are very normal, I'd be freaked out if you WEREN'T feeling these things. I hope the HepC stays completely dormant (is that possible, have they said?), or if not, that it's very well controlled with treatment and you don't ever have to suffer because of it.
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Jill D.
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« Reply #301 on: October 06, 2007, 09:28:47 PM »

Amanda, you continue to be in my thoughts and prayers. It is so difficult, mentally, to deal with things that are out of your control. I know that all of us with kidney disease deal with that to different degrees, but having something like this inflicted on you because of someone's error - well, I can't imagine. I do hope that it stays dormant and does not cause other problems or interferes with your new kidney.  :grouphug;

 I agree with everyone else....your scar looks fabulous! Mine is much thicker, like Cycobully's. No matter what, it's a beautiful thing!
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
Falkenbach
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« Reply #302 on: October 07, 2007, 03:45:11 AM »

your scar looks fabulous! Mine is much thicker, like Cycobully's. No matter what, it's a beautiful thing!

Couldn't agree more.
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RichardMEL
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« Reply #303 on: October 08, 2007, 01:08:21 AM »

OK I'm just joining the back of the queue to hug Amanda tight (well not TOO tight.. don't want the hard worker to gert squished!).... my it's so long I flew up to Brisbane and I still can't see the end of the queue! :)

You are reacting normally to the horrid situation life has dished out to you... in a sense to go from one frypot into another potential fire. I think you know we are all 1 million percent behind you and wishing that darn Hep C stays where it belongs... out of sight (but never out of mind).

*hugs*
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
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« Reply #304 on: October 08, 2007, 02:39:57 AM »

Hi All

At 3 this morning the hospital called and advised they have a Kidney for Amanda!! The chances to me of this happening before my wedding is like winning the lotto!!! The match was 6 out of 6 which you only get with identical twins!! So its a very good sign only problem os the girl who passed who we have been told is only 27 years old had been on life support for 7 weeks when her heart gave up on her! The Drs have advised she had anamonia but she is 27 and died of anamonia?? Drs dont really know what this girl died off.  They dont know if this same bacteria that got her may still be in the Kidney.  Drs think it will be hard one and the kidney may not work straight away cause the girl was so sick for so long..

We have taken a risk and we hope its thr right one sooo please pray for us.. She should be out of the operation at 6-7 Sydney Australia time..

Thanks for all your prayers

Rose
wow that is amazing!!!! I just had tp say 6 out of 6! Congrats!!  :yahoo;

Amanda is going to have her stent removed tomorrow because she has a bad infection and they think that might be the source of it. I will let her know that everyone wants to see her scar, I tried to wake her up saying "let me take a picture of your scar" and she got mad that i woke her up.  :rant;  >:D   :lol;

Here is a picture of Amanda and her new Kidney.



Holy crap she is soooo pretty!! What I mean is, that is someone who JUST had a transplant?? Am I missing something  :thumbup;
« Last Edit: October 08, 2007, 02:43:29 AM by Coping » Logged

- Ame {Pronounced Aimee or as some people say my name Amy}
paddbear0000
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« Reply #305 on: October 08, 2007, 12:33:35 PM »

Your scar looks GREAT Amanda!!! I hope I'm that lucky! Keep fighting!   :boxing;   :cuddle;
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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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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.
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« Reply #306 on: October 09, 2007, 01:35:52 PM »

I'm working on writing a long story with all the details at the moment for you all.  :)

On another note... I have been having a struggle lately emotionally worrying about the Hepatitis thing. I know I'm not the only one with this virus but the way i got it just makes it that much harder to get over. I am worried about what it means for me now and for my future. Don't get me wrong i am happy i got the transplant and am THRILLED to be off that yucky machine, but i just wish things would of gone different, and no matter how hard i try to get over it, i cant. The 70 day inquest into the situation will be over soon. Maybe after hearing some explanation i might feel better... hmmmm maybe.

I just hope i can try to FULLY accept what has happend and move on with it.

Thats about it for my transplant update tonight. Thanks for listening.

Love you all.

Amanda
xxoo


Manda May - Focus on your kidney for now. You will know more in the future but you need to work on what you can now, which is eating, walking, taking your meds and drinking lots of water. Hope to hear more from you soon!
 :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
Amanda From OZ
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« Reply #307 on: October 10, 2007, 07:44:45 AM »

Hey Everyone,

Thanks once again for you kind comments, you guys are the best.  :grouphug;

Well i have had a few days to recover mentally and physically and am feeling a lot better. And as my kidney goes, it couldn't be better my creat. is now 82  :) and they are very pleased with my progress. I also started back at the gym yesterday and am feeling pretty good other than still being sore and achy around the transplant area, which I'm told is normal.

OK well here is my transplant story about getting the call..............................  :)

On the 31st of August 2007, at 2.15am in the morning the phone rang and  my mother answered a phone call from my Professor he stated that there was a kidney available for me. I was in the kitchen getting a drink. My heart started beating a thousand miles a minute when I heard my mums reaction. I then spoke to My doc, and he went on to tell me that  he had a kidney available for me and that the kidney was a “perfect match a 6 out of 6 antigen match, which is the best you can get, he then went on to tell me that the donor was a 28 year old Female who had died from pneumonia, and had been in hospital for several week. I was also told at that time that the donor was a recreational drug user, which was explained to me that it meant she used drugs socially. but all the test at the time had come back negative for HIV. I was also told there was no risk in the patient having any form of hepatitis.  After a lot of reassurance from my Kidney Physician I then decided I would come into the ER and talk to him and the rest of the team. I got a few things together, had a quick shower, and then made my way to the hospital with my Family, rick, and cousins.

We arrived at Royal Prince Alfred Emergency Room at around 4.00am, I was soon seen by the clergy nurse who took my Observation, such as blood pressure, temperature and ECG. I was then ushered into s room in the ER with my parents, sister and rick where blood was taken, and a chest XRAY was done. I was then met in the ER by Prof.  who has been a great source of support for my family in the past. He told me that he thought this kidney transplant was my best option at living a normal life, and the risk of staying on dialysis out scaled the risk of taking this transplant.

I then met with the transplant co-ordinator and surgeons who discussed the surgery and the risk.

Even though I was so nervous and scared about getting this kidney, I had been waiting for this transplant for 3 and a half years, and I was told I might not get another call for another 4 – 8 years if ever, and with all the risk been taken care of ( I thought), I had nothing to lose but to listen to the advice passed on from the red cross to the doctors and take this kidney.

After meeting all the doctors and surgeons I was waiting in the ER for another 4 hours while they waited for my blood results to come back and a room to be available on level 9, transplant.

At around 10.40pm I was escorted upstairs from the E.R to level 9 room 24 where nurses got me ready for surgery and started me on some anti-rejection drugs and told me that I would be going down to surgery at around 1.00pm. Soon after arriving upstairs I met an anesthesia doctor who went through my drug allergies and what the plan was. I was then told I need to go into surgery straight away, and between 11.00am – 11.30am I was wheeled down to level three to prepare for the surgery. While in the theater room I felt all these emotions rush in. I was so scared, excited, nervous, and most important uncertain of the outcome... i will never forget those emotions. The last thing I remember was someone telling me it was all going to be okay and we will see you soon…. And I was fast asleep.

I remember then being wheeled upstairs from recovery to transplant isolation, I distinctively remember seeing all my family and friends waiting for me, and greeting me in the hallway.  I still remember that feeling…. It felt good  to know that I was okay and had made it…….......

After that a lot of hard days followed due to the fact of me finding out about the donor’s complication, those days are the ones I try to forget about. Legally the matter will go further and I will make sure that a situation like that will not affect any other Australians again. But right now I will focus on getting better and appreciating my new kidney which was given to me by a selfish act by the donor family.

Most importantly everyone should concentrate on the positive of my story…. That someone died and gave me a second chance in life, off dialysis and away from the complications and routine of dialysis. Even though I know I didn’t wait as long as many of you, I was finding it very hard in the last few months, and even though I never shared it with many people I honestly didn’t know how much longer mentally I could handle it for. Regardless of my complication I am forever grateful for the young woman that lost her battle to survive on the 30th of august 2007, and her and her family will never be far from my thoughts.

Love you all.

Amanda
xxoo


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KR Cincy
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« Reply #308 on: October 10, 2007, 08:01:37 AM »

What a story! Thanks for sharing that, as well as the complications, with us all Amanda. I realize, in my own head, I've got fantasy visions of what the transplant - and life thereafter - will be like. It's nice being reminded of the realities of it all...even though it's some time away for me.

I wish you nothing but the very best while you heal and move forward with your life.
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Not giving up...thanks to Susan.
Joe Paul
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« Reply #309 on: October 10, 2007, 08:23:53 AM »

Great story Amanda!!
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"The history of discovery is completed by those who don't follow rules"
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Transplant Jan. 8, 2010
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« Reply #310 on: October 10, 2007, 09:00:55 AM »

great story- :grouphug;
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I will miss him- FOREVER

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nephrectomy april13,2006
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« Reply #311 on: October 10, 2007, 09:02:33 AM »

Thanks for telling us Amanda! That's a great story.  :cuddle;

(modified later because I can't type anymore!)
« Last Edit: October 10, 2007, 10:41:47 AM by paddbear0000 » Logged

********************************************************
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
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
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.
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He is the love of my life......

« Reply #312 on: October 10, 2007, 10:11:27 AM »

 :clap; BRAVO Amanda,  now that is what i am talking about, thats what i wanted to hear,  :2thumbsup;  I am so proud of you, YOU GO GIRL  :clap;  You just keep on doing what your doing to get healthy, and STAY healthy and remember, you always have us besides you  :grouphug;  I love ya girlfriend  :cuddle;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
RichardMEL
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« Reply #313 on: October 10, 2007, 10:35:09 AM »

thank you for sharing Amanda *hugs*

I have been told almost always "the call" comes in the early hours... I always wonder if/when I will get thatcall and how it will be.. I imagine pretty much the same as you felt.. anxious, excited, nervous... everything!!!

It is so good to hear you are doing so well with your results and able to get back to living a good life.. we know about your complication and pray it keeps to itself but I am sure being free of that bloody machine and everything associated with it is such a wonderful blessing....

thank you for sharing so much of your trials and tribulations with us all. You are an inspiration to many here.

xox
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
willieandwinnie
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« Reply #314 on: October 10, 2007, 10:42:22 AM »

Thank You Amanda

willieandwinnie
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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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« Reply #315 on: October 10, 2007, 12:00:31 PM »

Hi Amanda,
You are are great at adapting to life - and that will help you in whatever you have to face. You are strong and brave and smart! I hope your health stays good for a very long time!

 :cuddle; Love 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
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WOO HOO NEW KIDNEY PEEING !!!(Transplant 23/10/07)

« Reply #316 on: October 10, 2007, 02:29:04 PM »

Amanda,

Your a beautiful girl, inside and out and you deserve it.

You will always be in my thoughts and hey just like me your a LIL AUSSIE BATTLER you GO GIRL !!!!  :ausflag;

Love Ya

Tamara xxxx oooo  :grouphug;  :cuddle;  :waving;  :clap;  ;D  :grouphug;
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ABO Incompatible Transplant from my loving Partner 23/10/07
after over four years on the D Machine 

                                                                                                                  
Dialysis Sucks and Transplants Don't.................So Far Anyway !!!!!
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« Reply #317 on: October 10, 2007, 04:28:20 PM »

 :cuddle;
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Home Hemo  18 months
Live donor transplant 28th October 2008
from my beautiful sister
Royal Prince Alfred Sydney Australia

Live donors rock
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« Reply #318 on: October 10, 2007, 05:13:19 PM »

Thanks for sharing your story Amanda!!  :cuddle;
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Don't take your organs to heaven.  Heaven knows we need them here.
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« Reply #319 on: October 10, 2007, 06:07:46 PM »

And as my kidney goes, it couldn't be better my creat. is now 82  :)
:secret; goodness me!!! Very impressive, Amanda. I'm so pleased!! I haven't even finished reading your post yet, but had to comment on this as it's such a great creatinine level  :yahoo;
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« Reply #320 on: October 10, 2007, 06:58:08 PM »

Amanda, your positive attitude is truly an inspiration. I wish you the best of luck and I hope you have a long and healthy life with your new kidney  :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
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i am awesome.

« Reply #321 on: October 10, 2007, 07:07:06 PM »

Excellent story, and I love how you focus on the positives! Your truly an inspriing positive person and I hope nothing but the best for you hun!  :grouphug;
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Live Donor Transplant From My Mom 12/14/1999
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Jill D.
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« Reply #322 on: October 10, 2007, 07:24:35 PM »

You're an amazing young woman Amanda! You will forever be stronger in many ways after this experience.   :grouphug;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
Amanda From OZ
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« Reply #323 on: October 13, 2007, 07:49:22 AM »

Thanks again everyone.  :cuddle;

Well i found out today i have a small hemotoma (can;t rememebr the exact word) in other words i think it meant a blood clot near my kidney they said i shouldn't be worried, and if it gets bigger i might have to get it removed. Has anyone else experienced this? I hope it goes away soon and i don't need surgery.

My creat is still in the 80's so they are very pleased.

Hope everyone is well.

Amanda
xxoo

 :cuddle;
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2_DallasCowboys
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« Reply #324 on: October 13, 2007, 08:54:35 AM »

Amanda,

Sorry to see your post about the hematoma.  I will pray it turns out to be
nothing.   Your strength is truly an inspiration for many people.  Keep up
your positive attitude!  God Bless,

Anne
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