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Author Topic: What NOT to do or say at the Transplant Evaluation!  (Read 57992 times)
Chris
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« Reply #75 on: June 07, 2011, 10:02:29 PM »

 :rofl;
Leave the hooker three inch heels at home.

Or........
 
Wait for it...Wait For It.
 
 
 
 
 
 
Leave the Hooker at home  :rofl;
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?
kellyt
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« Reply #76 on: June 07, 2011, 11:15:57 PM »

Will the antirejection drugs interact with my recreational drug use?


Or will they enhance them?   
Logged

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
kellyt
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« Reply #77 on: June 07, 2011, 11:16:43 PM »

Let's get this over with!  I don't even LIKE peeing!!   :sir ken;
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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
kellyt
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« Reply #78 on: June 07, 2011, 11:23:37 PM »

Wait.  What do you mean I will start peeing regularly?  I kinda like not having to stop for bathroom breaks.   :o
Logged

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
Chris
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« Reply #79 on: June 07, 2011, 11:27:42 PM »

Let's get this over with!  I don't even LIKE peeing!!   :sir ken;

I do sometimes think that, usually at the time I can't get the door open fast enough, or while traveling. :bandance;
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?
M3Riddler
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« Reply #80 on: June 08, 2011, 11:17:48 AM »


............. Saying that you want to go on Nocturnal Using NxStage at a Davita Clinic............
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____________________________________
Peritoneal - 13 years
NxStage Since 4/06
3 Transplants
Admin of Dialysis Discussion Uncensored on Facebook  
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Chris
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« Reply #81 on: June 08, 2011, 10:11:27 PM »

 ???   I don't get the joke as something not to say to the transplant center. I don't think that would raise an eyebrow.
« Last Edit: June 08, 2011, 10:13:40 PM by Chris » 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?
Aubrey
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I say, you fellows!

« Reply #82 on: June 28, 2011, 05:13:47 AM »

Will the antirejection drugs interact with my recreational drug use?

This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous. Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.

In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.


The peeing stuff: I've just about stopped now, and I miss it. There was nothing like a good lash; and I look forward to doing it again.
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Deanne
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« Reply #83 on: June 28, 2011, 01:59:33 PM »

Will the antirejection drugs interact with my recreational drug use?

This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous. Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.

In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.


In the US, "recreational" = "illegal" when talking about drugs. Anti-histamines & the like are referred to as OTC (over-the-counter), not recreational.

I considered asking them to help me write an appropriate ads for craigslist, but thought better of it. Something like:

-----------

BFF needed to provide post-surgical care for kidney transplant recipient. BFF must attend all medical appointments and appear interested and aware without really giving a hoot. I will provide you with a list of questions you may be asked at these appointments and the correct responses to these questions. Examples:

Q: How long have you known Deanne?
A: We grew up together. I'd do anything for her.

Q: If Deanne called you in the middle of the night to go to the hospital, how long would it take you to get to her house?
A: Approximately 5 seconds. I'll be sitting on a chair outside her bedroom door all night, just in case she needs me.

You must not, under any circumstances reveal how much I am paying you for this service.

--------

Logged

Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #84 on: June 28, 2011, 02:49:33 PM »

LOL @ Deanne.  I dare you to do that!  That would be brilliant!
Logged

"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."
kellyt
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« Reply #85 on: June 28, 2011, 02:51:05 PM »

Will the antirejection drugs interact with my recreational drug use?

This should not make any difference (it might; but it should not). You would be asking a serious question. I don't think anyone these days (with any sense) thinks that just because a drug is illegal it is therefore dangerous.  Asking about interaction with antirejection drugs is just good sense. You should do it with any drug: anti-histamine, paracetamol, etc. If some illegal drugs are bad to take with antirejection drugs, you'll want to know which ones they are, and which ones are ok.

In England, the hospitals give you a form on admission asking you to list recreational drugs you take; I imagine this is the kind of thing it is for: not so they can not treat you, or call the police.


The peeing stuff: I've just about stopped now, and I miss it. There was nothing like a good lash; and I look forward to doing it again.


Good Luck on your transplant journey.

Drug and Alcohol Abuse
 
The kidneys have several functions, one of which is filtering waste from the blood. Excess alcohol consumption and the abuse of illegal drugs take a toll on the kidneys and can result in additional kidney damage. Patients with a history of drug and alcohol abuse do not make good candidates for kidney transplant. One of the concerns associated with performing on a transplant on a patient with this type of history is that he will relapse after kidney transplant. Continuing to abuse alcohol and drugs will damage the transplanted kidney, resulting in serious complications.
« Last Edit: June 28, 2011, 02:57:35 PM by kellyt » Logged

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
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #86 on: June 28, 2011, 07:37:30 PM »

Many hospitals in the US don't want to hear you are taking illegal drugs while needing a kidney or any other organ. They equate that as you are not going to be taking good care of your kidney since you like smoking, shooting up, snorting, etc substances that are harmful and dangerous to your body.

I don't appreciate you insinuating that I don't have any sense b/c I think illegal drugs are dangerous...I wouldn't give a new liver to someone who was an IV drug user and an alcoholic. What a waste of a precious gift of life.  It is one thing to have an occasional drink and quite another if you could be a story on that show Intervention!!!
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?
Chris
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« Reply #87 on: June 28, 2011, 09:59:22 PM »

I like Deanne's comment, got back on track of the thread of being humorous :2thumbsup; :rofl;
 
Another answer, BFF is an insomniac, BFF is always up at night at my beckon call sitting on laying on the sofa watching tv or being on the pc.....lol
 
 
Sooo, what's the pay grade? :-[ :rofl; :rofl; :rofl; :rofl; :rofl;
I do sleep on the flor or on a couch.
« Last Edit: June 28, 2011, 10:14:48 PM by Chris » 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?
MooseMom
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« Reply #88 on: June 28, 2011, 10:04:18 PM »

...or playing video games just like my husband is doing now.  How old is he, like, 12? ::)
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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."
Desert Dancer
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« Reply #89 on: July 05, 2011, 12:00:35 PM »

"What do you mean, I can't barter for the immunosuppresents?"
« Last Edit: July 05, 2011, 12:09:57 PM by Desert Dancer » Logged

August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Chris
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« Reply #90 on: July 05, 2011, 07:42:54 PM »

"What do you mean, I can't barter for the immunosuppresents?"

 :2thumbsup; :rofl; :rofl; :rofl; :rofl;
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?
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #91 on: October 27, 2011, 10:59:04 PM »

 :bump;
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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
kellyt
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« Reply #92 on: October 28, 2011, 02:31:07 PM »

"Can you just shove three or four kidneys in there so I don't have to come back?"
Logged

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
Joe
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« Reply #93 on: October 29, 2011, 03:53:50 PM »

Love that one Kelly! :2thumbsup; :rofl;
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
Rerun
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Going through life tied to a chair!

« Reply #94 on: October 29, 2011, 05:11:12 PM »

"Can you just shove three or four kidneys in there so I don't have to come back?"

 :rofl;
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shorty590000
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« Reply #95 on: December 10, 2011, 09:38:40 AM »

I have been reading on here about the issue with illegal drugs and transplant....I hope I dont get any ugly remarks, as I almost died in May as a result of a 20 year battle with drug addiction....I could list all the things that preempted my drug use but won't.. I am still a drug addict.. in recovery... I had been clean a year before a replapse...and wound up in ESRD....I hear all this that I am a poor candidate... I just want to know, is it even realistic for me to hope for a kidney one day? Or should I just come to grips with the fact that it is a lost cause due to my history? I understand all the relapse factors... I just want someone to tell me one way or the other so I am not leaning on false hope..
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Michelle
MooseMom
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« Reply #96 on: December 10, 2011, 12:47:32 PM »

It is not the business of anyone, even transplant centers, to sit in judgment of you.  What they care about is your future and how your drug use/addiction might affect a new kidney.  Kidneys deemed suitable for transplantation are so rare and are so precious, and no transplant center is going to risk a new kidney with someone they feel may not take care of it. 

To be honest, I don't think you would be as good a candidate as someone who did not have a history of substance abuse, but that does not mean it would be impossible.  Each transplant center has its own rules, and one center may rule you out immediately while another may have you interview with a social worker who could better determine if you have what it takes to be a successful recipient.

The only way you will find out is to ask.  Ask more than one tx center.

Another thing to think about is your own survival.  I'm sure you know you will have to take all kinds of anti-rejection drugs and antibiotics for the rest of your life, and I would think that those combined with illegal drugs wouldn't just kill your new kidney, but it would very likely kill the rest of you, too.  Do you want to take that chance?  Is your survival instinct stronger than your addiction?
Logged

"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."
shorty590000
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« Reply #97 on: December 11, 2011, 06:23:23 AM »

Moose Mom, thanks for the input and honesty....and my survival instinct is very strong... addiction is a daily battle though... some days are better than others.. when u learn to rely on chemical susbstances to cover pain for so many years its hard to learn to feel again.. but I have conquered it before.. and I am now.. and I will continue to.....there are just so many unkowns right now... I wish I could look into the future and have SOME idea as to how long I may be off dialysis....at 20% kidney function I have no idea... I was so sick on dialysis... hate the day that I have to return.. but thankful to be alive...
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Michelle
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« Reply #98 on: December 11, 2011, 10:37:15 AM »

Regarding how long your kidneys will stay at 20%, a lot depends upon what caused your ESRD in the first place.  If it was acute injury due to drug use, then logically you would think that if you cease the drug use, your kidneys will at least not get any worse.  I could be wrong about that, but if you have an underlying renal disease like fsgs or if you are diabetic, those things coupled with drug use will almost certainly lead to further deterioration.  Again, I'm just guessing about that, so if someone else has better information, please say so!

I myself have fsgs, and I have had it for over 20 years now.  I found out my egfr was in the low twenties back in 2004, and then in 2009, it dipped below 20.  I have not yet started dialysis, and it could be a few more years before I have to start, or it could be after the New Year...who knows?  So I do understand the frustrating uncertainty, but I console myself with the knowledge that I'm not on dialysis TODAY.

What does your neph say?  Does s/he anticipate that your function will deteriorate?  What are you doing to preserve the function you have?

It is a daily battle for me not to sink into the morass of depression, so I have some appreciation of what it is like to engage in this sort of warfare.  It's certainly not as demanding as battling addiction, but I have some small idea of what you must be experiencing.  I am very admiring of anyone who is fighting addiction of any sort, so my hat is off to you. :cuddle;

If I were in your position, I think I'd have driven myself crazy with too many "what ifs" and "what nows".  I would encourage you to start trying to get some answers for yourself.  Start with your nephrologist and try to get some idea of what you might expect in the future.  S/he might not be willing to speculate, but you can ask, anyway.  Then see if you can get a referral to a transplant center and speak to them.  They probably have some sort of protocol they may require you to complete before they agree to start the listing process.  My husband's secretary's cousin was/is an alcoholic and destroyed his liver, but he got a liver transplant, so it's not entirely impossible that you may have a chance, too.

I don't know anything about addiction, but I can't help but think that having to return to dialysis would be just about the best weapon anyone could possibly have in their daily battle.

Good luck, and let me know what you plan to do next. :cuddle;
Logged

"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."
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #99 on: December 11, 2011, 10:39:57 AM »

I have been reading on here about the issue with illegal drugs and transplant....I hope I dont get any ugly remarks, as I almost died in May as a result of a 20 year battle with drug addiction....I could list all the things that preempted my drug use but won't.. I am still a drug addict.. in recovery... I had been clean a year before a replapse...and wound up in ESRD....I hear all this that I am a poor candidate... I just want to know, is it even realistic for me to hope for a kidney one day? Or should I just come to grips with the fact that it is a lost cause due to my history? I understand all the relapse factors... I just want someone to tell me one way or the other so I am not leaning on false hope..

Thought of you when I read this http://ihatedialysis.com/forum/index.php?topic=25242.0
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
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