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Author Topic: Keep your fingers crossed please...  (Read 17256 times)
okarol
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« Reply #25 on: January 12, 2011, 10:59:02 AM »
Quote from: rsudock on January 11, 2011, 02:43:41 PM
got the call today....not a match.    :'(  PRAs are high...I insisted about plasmapheresis....the doc told me, "I need you to stay level headed why I look into this."   :'(

I am sorry, but hope you get a match soon.
Jeez that's an odd comment by the doc. It's hard to be calm, he should know that.
 :cuddle; :cuddle; :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
Riki
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« Reply #26 on: January 12, 2011, 09:58:56 PM »
My appointment is tomorrow.  I'm a little afraid of going to see him.  I have an odd feeling that they are trying to deter me from transplant, because they believe the misguided notions of one doctor who believes I sabotaged my last 2 kidneys and gave myself peritonitis with the aim of getting attention or sympathy.

Because of her, when I'm admitted to the hospital in Halifax, I'm watched, and when given medication, I have to take it then and there while they are watching me.  It wasn't until I got the fungal infection that nearly killed me that I was treated like a person instead of a criminal.  I was told that the reason was that there was no way I could have given myself that infection.
Logged
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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #27 on: January 24, 2011, 04:24:02 PM »
RIKI how did your appt go with the neph about transplant? I've been thinking about you...

Well the kind woman who got tested and wasn't a match is now telling me her husband wants to be tested. (2 years ago his life was in jeopardy b/c of a nonmalignant brain tumor, so he wants to give back) i keep dragging my feet to go and setup a time to get our blood drawn....i am to afraid to hear the words "not a match" again. i know dialysis is not a death sentence but to live with no hope...am I up for it?

xo,
 R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
carol1987
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« Reply #28 on: January 24, 2011, 05:04:16 PM »
Rsudok
would one of the donors be willing to donate on your behalf so you can get into a transplant chain?

Carol
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Riki
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« Reply #29 on: January 24, 2011, 06:56:33 PM »
Quote from: rsudock on January 24, 2011, 04:24:02 PM
RIKI how did your appt go with the neph about transplant? I've been thinking about you...

He seemed very open to anything I had to say and was really positive about Mom being assessed for the Paired Donor Exchange Program.  She has an appointment on February 10.  I haven't heard anything from the friend who offered me her kidney before Christmas, so I'm thinking she's probably having second thoughts
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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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #30 on: February 08, 2011, 12:56:30 PM »
well guess what folks my 3rd living donor that was tested was a MATCH!!!!!  :bow;  :clap; I have no idea what the rest of the process is now that we established a match but I put a call in to the transplant institute....maybe just maybe I will get off of this machine, but if I don't I am going to make the best of being on dialysis. Thanks to everyone out there for their support!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
carol1987
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« Reply #31 on: February 20, 2011, 11:36:36 AM »
Quote from: rsudock on February 08, 2011, 12:56:30 PM
well guess what folks my 3rd living donor that was tested was a MATCH!!!!!  :bow;  :clap; I have no idea what the rest of the process is now that we established a match but I put a call in to the transplant institute....maybe just maybe I will get off of this machine, but if I don't I am going to make the best of being on dialysis. Thanks to everyone out there for their support!

xo,
R
:2thumbsup; :2thumbsup; :2thumbsup; :2thumbsup;
Yay.. hope everything keeps moving forward and you get that transplant!!
Logged
Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #32 on: February 21, 2011, 06:02:20 AM »
thank you for caring enough to post carol! :)

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #33 on: March 05, 2011, 09:14:40 AM »
My living donor (Jeff) and his wife contacted me via facebook to tell me how the process is going. march 16th and 21st are the rest of the testing he needs done to be a donor. April 1 (April Fool's Day...is that a good omen?)  our case goes to transplant committee to get confirmed that we are good candidates for surgery. The possible surgery dates could be as soon as late April or early May!!!! I am thisclose   to getting a new lease on life...let's hope everything works out!!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
peleroja
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« Reply #34 on: March 05, 2011, 12:50:00 PM »
Fingers, toes and eyes crossed for you.  Let us know how it goes.
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chook
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« Reply #35 on: March 05, 2011, 03:45:04 PM »
I'll be keeping an eye out here for more news. All the best.
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
okarol
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« Reply #36 on: March 05, 2011, 09:00:44 PM »
 :2thumbsup; Great - I hope all progresses smoothly!
Logged

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
galvo
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« Reply #37 on: March 05, 2011, 09:05:47 PM »
Hopin' and a prayin'.
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Galvo
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In da House.
« Reply #38 on: March 07, 2011, 11:37:32 AM »
I hope you get the GO ahead, fingers x'd for you .
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Des
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« Reply #39 on: March 08, 2011, 03:02:45 AM »
Quote from: rsudock on March 05, 2011, 09:14:40 AM
My living donor (Jeff) and his wife contacted me via facebook to tell me how the process is going. march 16th and 21st are the rest of the testing he needs done to be a donor. April 1 (April Fool's Day...is that a good omen?)  our case goes to transplant committee to get confirmed that we are good candidates for surgery. The possible surgery dates could be as soon as late April or early May!!!! I am thisclose   to getting a new lease on life...let's hope everything works out!!

xo,
R

yeah for you and yeah for me! It looks like we might be having it at the same time!!!!!! :bandance; :bandance; :cheer:

DONORS ARE GREAT!!
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Riki
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« Reply #40 on: March 11, 2011, 11:16:53 AM »
My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.
Logged
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
okarol
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« Reply #41 on: March 11, 2011, 11:25:17 AM »
Quote from: Riki on March 11, 2011, 11:16:53 AM
My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.
:2thumbsup; Good news!
Logged

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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #42 on: March 12, 2011, 01:27:48 AM »
Quote from: Riki on March 11, 2011, 11:16:53 AM
My mom has started the assessment process to become a living donor and we plan on registering with the paired donor exchange program once she is approved. The friend who offered me jer kidney is still interested and is going over the info that the live donor coordinator gave us.

Alright Riki sounds promising!!! Thanks for keeping me updated!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Des
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« Reply #43 on: March 14, 2011, 12:26:31 AM »
 :cheer: :bandance;

Good news. Holding thumbs :thumbup;
Logged
Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
Riki
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« Reply #44 on: March 15, 2011, 11:23:06 PM »
Mom got the results from her blood work.  They said everything looks good except that her blood sugar is a little high.  They said that they think that will go down as she loses weight.  They told her that she'd have to lose 40lbs.  I actually don't see that happening.  I've been trying to get her to go to a swim class or go walking for over a year.  I think we went out for a walk once last summer.  Once this foolish snow goes away, I intend to start walking again.  I need to be able to impress my best friend when I go to NY to visit her in the fall.  I impressed her last spring by being able to get up off the ground without any assistance.. *LOL* I want to be able to keep up with her.  She walks really fast
Logged
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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #45 on: April 06, 2011, 03:52:53 PM »
hey friends just an update on the living donor situation...
The surgeon told Jeff to lost 15 pounds. So at 12 pounds he called the hospital to let them know and was told "Lost another 12 pounds." So I am sitting just waiting patiently...or at least trying to!!! ha!!

Why don't they tell living donors at the beginning.."hey just go on the diet why you do this process b/c in the end you probably need to lose some weight." Ya know let them get a heads up and get the process going?

Oh well the hoops we must jump through....of course it will be healthier for Jeff and that is important as well!! Want him to be as safe as he can be!!!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
Riki
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« Reply #46 on: April 20, 2011, 04:38:38 AM »
They told Mom before she had any testing done that she'd have to lose 40lbs... she's lost 5 so far, which is a good start, I'd say..
Logged
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
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #47 on: April 20, 2011, 03:02:48 PM »
Jeff has 7 pounds to go!!!!

Rikki glad mom is getting the ball rolling!!!

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #48 on: May 19, 2011, 08:03:17 PM »
HI everybody my living donor has lost all the weight!!! so tomorrow he goes for final testing and to meet another neph. Let us hope that this is the final thing and everything works out!!! Yes if it doesn't work out I will be crushed but I will get through it....

No matter what, I can conquer anything....even dialysis!

FINGERS CROSSED!!!  :bow;

xo,
R
Logged
Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
jbeany
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« Reply #49 on: May 19, 2011, 08:23:26 PM »
 :2thumbsup;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.
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