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Author Topic: May have lost my chance  (Read 4850 times)
murf
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« on: December 03, 2010, 11:29:59 PM »
Have had some devastating news. After five years of waiting patiently for a transplant and looking after myself to get this gift, I may be taken off the list. Apparently, the continuous dialysis has strained my heart and the stress test wasn't too flash. Have to go through a series of tests: echo cardiogram. angiogram and a 24 hour heart monitor to see how bad it is. Then I will be told if I can remain on the list. I have never felt so low.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
Chris
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« Reply #1 on: December 03, 2010, 11:47:49 PM »
Don't get to worried just yet. It could just be a safety check, a glitch on their reading due to a bad day.
 
Until they say no, don't worry and even if they say no, you are on a back up plan to survive. A different center may have diferent standards if one is nearby.
 
Good :Luck murf
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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?
natnnnat
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« Reply #2 on: December 04, 2010, 04:37:57 AM »
Chris is right.    But waiting to find out can be pretty horrible.    [fingers crossed icon] for you Murf.  Can you make your dialysis slower than slow and get your heart looking flash for the readings?  When are the tests and when do you find out?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
kitkatz
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« Reply #3 on: December 04, 2010, 11:01:32 AM »
Quote from: murf on December 03, 2010, 11:29:59 PM
Have had some devastating news. After five years of waiting patiently for a transplant and looking after myself to get this gift, I may be taken off the list. Apparently, the continuous dialysis has strained my heart and the stress test wasn't too flash. Have to go through a series of tests: echo cardiogram. angiogram and a 24 hour heart monitor to see how bad it is. Then I will be told if I can remain on the list. I have never felt so low.


Good luck on all of the testing. 

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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
jbeany
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« Reply #4 on: December 04, 2010, 11:18:24 AM »
 :grouphug;
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« Reply #5 on: December 04, 2010, 12:04:29 PM »
you've been stressed lately too, because of the drainage bag thing.. I'd wait until after the tests are done to worry.. you may have just had a bad day
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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
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boswife
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us and fam easter 2013
« Reply #6 on: December 04, 2010, 02:28:06 PM »
I surely hope not..  I do know that hubby has gone in for 'testing' (heart but not for kidney workup) and has had such different outcomes due to stresses.  Hopfully, yours will bounce back when your feeling better..  :pray;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
Mizar
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« Reply #7 on: December 04, 2010, 03:04:27 PM »
Try to stay Busy and Positive, till all the Testing is done.  :grouphug;
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kellyt
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« Reply #8 on: December 04, 2010, 03:10:21 PM »
 :grouphug;   Hang in there.  We'll wait with you...
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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
carol1987
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« Reply #9 on: December 04, 2010, 04:45:51 PM »
 :cuddle;  :cuddle; hang in there!!!!
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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...)
MooseMom
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« Reply #10 on: December 04, 2010, 11:00:44 PM »
Oh no, I'd be devastated, too...I won't lie about that.  So, what happens next, and when?  I'm keeping my fingers crossed for you.  Please keep us posted, OK?  We're all here for you.
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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."
Jean
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« Reply #11 on: December 04, 2010, 11:43:39 PM »
After just being thru the stress test and the angiogram, I can tell you from first hand knowledge, that the stress test is not so accurate, so, really, try not to worry about this. Besides that, worrying is not good for you. Hopefully, all of your tests will come back okay and it was a fluke to begin with. I will be   :pray;  for you.
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One day at a time, thats all I can do.
huldafolk
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« Reply #12 on: December 05, 2010, 10:46:15 AM »
My stress test/ MIBI  chemical stressor, was extremely accurate. It indicated a blockage/constriction of the right coronary artery at the base of the heart. With follow-up angiogram there was a 90% blockage of the RCA as indicated. Angioplasty and a bare metal stent was placed. ASA for life and PLAVIX for 2 to 12 months. off transplant list until plavix has protected the stent long enough for a membrane to cover it over and reduce likelihood of clot formation with the stent.. Lots of bruising and internal bleeding with falling Hemoglobin #'s.Dialysis of any kind is very hard on the body/especially the heart.It is a battle trying to stay healthy enough to get on the transplant list, and to stay on it long enough to get to the top and actually get a transplant. I have been on the list here in Canada for 7 years, and I am just at the top getting NPO orders to stand by and then get the boot because of this heart issue. Glad they found the problem and I didn't just drop dead from a heart attack!!! but want back on that transplant list ASAP.   Best of luck with your tests!!! :2thumbsup;
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1980 diagnosed with ADPKD
2003 EMERG. Bi-lateral nephrectomies IVC STENT
2003-now 3x/week 4hours each hemo at clinic
2003-2004 multiple complications /ileostomy
2004 reversal of ileostomy
2010 colostomy
2003 to now ,on transplant list(on and off due to complications)
8 years on list> said to be at top of list for transplant.
2010 RCA Heart STENT
2011 Restent RCA with Drug Eluting (70% closed in 3 months)
LAD stent with drug eluting (66mm long stent)
On transplant list again!!2011/3
murf
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« Reply #13 on: December 07, 2010, 09:17:05 PM »
Most interesting development. Saw my nephrologist and told him how upset I was and how negative the cardiologist appeared to be. Kept sayings like "you are waisting somebody else's kidney". So he sacked him! Said your  stress test was not that bad. Did need another type of test with a different cardiologist. And in his own words: "We will work through this". Thank God for sensitive doctors. The old cardiologist (different hospital) rang me up and boy, was he cheesed off. Gave him the brush off. He can collect his money off somebody else.
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Started Hemodialysis Anzac Day 2005
Patiently waiting for a transplant
Started PD New Year 2010
Taken off transpalnt list, Jan 211
Riki
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« Reply #14 on: December 07, 2010, 09:22:32 PM »
LOVE IT!!  Murf, you have an awesome Neph... too bad we all couldn't have one like that...
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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
Chris
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« Reply #15 on: December 07, 2010, 09:43:35 PM »
That's great murf, but what's "cheesed off"?
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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?
Jean
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« Reply #16 on: December 07, 2010, 11:04:17 PM »
Murf, that is fantastic news!!!! I am so happy for you.   :clap;
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One day at a time, thats all I can do.
MooseMom
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« Reply #17 on: December 08, 2010, 09:22:18 AM »
OMG I can't believe that cardiologist said that to you!!!  That is appalling and quite right he was sacked.  Good for you.  Now, take that test and report back to us!!
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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."
rsudock
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will of the healthy makes up the fate of the sick.
« Reply #18 on: December 08, 2010, 04:17:43 PM »
keep fighting murf!!   :boxing;

xo,
R
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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?
Brightsky69
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« Reply #19 on: December 08, 2010, 07:39:37 PM »
Boy that guy sucks!!  I trust the new test will be good news. Stay positive!!

Practice Optimism
 
It is easy to live within the shadow of fear, procrastination, and pessimism. But these are bad habits and stumbling blocks the keep you from experiencing life, the Red Road, and the Great Spirit. It is well know to the Native people that optimism is the key to good health. Worry makes you sick--as do bad thoughts. Replace them with happiness and optimism and you shall live a long and healthy life.    :2thumbsup;
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Transplant June 11, 1991 (1st time) my mom's kidney
Received my 2nd kidney transplant Oct. 19th 2010.
RichardMEL
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« Reply #20 on: December 08, 2010, 08:48:27 PM »
haha Murf - your neph is a keeper! That's brilliant!

Imagine someone telling you that you'd be a waste of a kidney! The insensitivity is mind blowing!!!

I'm so glad this distressing situation is being turned around and you can again be positive mate!!!
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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 #21 on: December 09, 2010, 12:56:13 PM »
Chris... cheesed off is a nicer way of saying pissed off... *L*
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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
Chris
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« Reply #22 on: December 09, 2010, 03:11:09 PM »
Ohhh, well then he is an idiot. He was the one who made the mistake.
Logged
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?
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