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Author Topic: Ignorant things people have said to you  (Read 469373 times)
skyedogrocks
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Rob showing off his pot of gold!

« Reply #300 on: June 13, 2007, 08:51:48 AM »

Rob's family steams me when it comes to talking about his condition.  His mother is still confused as to what he can eat.  I gave her a list of foods he can't eat last year and she still asks me if he still can't eat cheese. Duh, no he can't. 

So for Easter this year, she was all distraught because Rob can't eat ham.  She was thinking of having a ham and turkey breast.  Ok, lady, you know ham is your son's favorite food, why the hell would you make one, have everyone eat it and then give him turkey?  I also told her he can't have potatoes, that plain white rice is the best.  She gets brown rice and makes a huge batch of mashed potatoes.  I could see if there were a ton of people at her house for the holidays, but it's just them, us and his sister, her hubby and son.  Not a heck of a lot of people.  I think they can handle not having ham & potatoes for one freaking day!

His Dad actually had the gall to say to us that we have no idea what his mother goes through trying to plan a meal for him, it's very hard on her.  Are you freaking kidding me?  I said to him, try being the one with the disease, then get back to us.  I said you have no idea what your son is going through.  Planning a meal every now and then is nothing compared to being the one with it or living with it.

It's a wonder why they don't like me very much  :rofl;

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Wife to Rob who is currently doing Nx Stage Home Hemo Dialysis.

11/17/09 After 4 years on dialysis, Rob received a kidney from our George.  Kidney is working great!  YEAH!!!!
larry781
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« Reply #301 on: June 15, 2007, 12:17:11 AM »

Stupid, inconsiderate and downright hostile things people have said to me: (and the responses
 I wish I had given)

"I pray for you!"
(Really? It doesn't seem to be working. Are you sure you didn't piss off God somehow?)

(on seeing my access) Are you a heroin addict?
(No, I'm high on life, and epogen!)

You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
(Really? and to think, I could have escaped 5 years of dialysis if I had just spent $10 at my corner drugstore!)

(said to me by someone sitting next to me at a meeting)Er, your disease isn't contagious, is it?
(It is, but only when when I'm careless around others with my Swiss Army knife)

I wish I could give you one of my kidneys!
(I wish I could give you some of my brain)

You know, you could actually buy yourself a kidney in India!
(I wish I could buy you a conscience in the USA)

You know (the name of some celebrity) had bad Kidneys...
(Oh good! I'm a cause celeb! What color is our ribbon?)

Larry from Long Island
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"You want to stick WHAT in my arm?!?"
Chicken Little
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« Reply #302 on: June 15, 2007, 12:38:00 PM »

You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
(Really? and to think, I could have escaped 5 years of dialysis if I had just spent $10 at my corner drugstore!)

I really hate this too.  I have several acquaintances that constantly send me information on homeopathic cures and are offended when I explain that herbs can't regenerate organs.   :urcrazy;
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lola
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I can fly!!!

« Reply #303 on: October 03, 2007, 12:37:08 PM »

Today the lab tech asked if Dani's anemia was from her not getting enough Iron in her diet wtf, when I told her it's from kidney failure she put her hand on Dani's and said "you poor thing you sure are going through alot."  :banghead; I know she was trying to be nice but it's none of her business why Dani has anemia.
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angela515
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« Reply #304 on: October 03, 2007, 01:05:29 PM »

I feel you lola... when people used to ask me as a child, it was annoying... I grew used to it realizing they are just interested in whats going on is all.  :grouphug;
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
kellyt
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« Reply #305 on: October 04, 2007, 02:45:53 PM »

Even though I was diagnosed in the early 90's I am really just starting the hard part of this long journey.  I haven't been placed on food restrictions yet, nor fluid.  I've just been instructed on moderation, etc.  In the last few weeks, since being told I had to get my fistula and since getting my fistula, I've had a couple of people (friends) say "I knew you had kidney problems, but I thought you were over it.  You don't sound/look sick".  Who goes to a specialist for 15 years with just a "kidney infection"?   I guess I should get used to it.  :)
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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
Jill D.
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« Reply #306 on: October 06, 2007, 10:30:54 PM »

Since my transplant, I have had many people ask "do you still have to do dialysis?" To which I tell them that dialysis is not necessary if a person has a functioning kidney.

I also have been asked "does your other kidney still work?" I remind them that a person can live on one kidney and if either one of my kidneys worked I would not have needed one of my sister's kidneys. Why would I leave her with one just so I could have two?

Most of the time I don't feel these are ignorant questions, it's just that people have NO IDEA what kidneys do or much about kidney disease. I am more than happy to enlighten them!
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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
angela515
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« Reply #307 on: October 06, 2007, 10:39:09 PM »

Since my transplant, I have had many people ask "do you still have to do dialysis?" To which I tell them that dialysis is not necessary if a person has a functioning kidney.

I also have been asked "does your other kidney still work?" I remind them that a person can live on one kidney and if either one of my kidneys worked I would not have needed one of my sister's kidneys. Why would I leave her with one just so I could have two?

Most of the time I don't feel these are ignorant questions, it's just that people have NO IDEA what kidneys do or much about kidney disease. I am more than happy to enlighten them!

I agree with you Jill... I get these same questions (among others), and even from NURSES, geesh. I agree, we need to enlighten them and educate them. :)
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
ssticker
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« Reply #308 on: October 07, 2007, 07:00:43 AM »

There are things known
and things unknown
and in between
are the doors

Jim Morrison

open ONE every day of your life
DC
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In Center HD '99
SELF stick '99
Buttonhole '07
Some of the worst mistakes of my life have been haircuts.
Jim Morrison
Zach
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"Still crazy after all these years."

« Reply #309 on: October 07, 2007, 09:11:45 AM »

There are things known
and things unknown
and in between
are the doors

Jim Morrison

open ONE every day of your life
DC

I hear ya, man.  I hear ya.
 8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
KT0930
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« Reply #310 on: October 07, 2007, 03:07:19 PM »

You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
I get asked this about my son's ADHD all the time. Damn it pisses me off!

The winner on the kidney disease, though was from my boss (who's normally pretty on top of it, he just says the first thing that comes to his mind)...a woman who works for our company but lives out of state was just diagnosed last weekend with kidney failure, guess who got to tell the boss? The one who knows the most about it, of course. His first question was: "Is she going to die?"  ???  I sure wish I could revisit that conversation and really educate him about it, but I was just so taken aback that all I could say is, "no, she can do dialysis".  :banghead;
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #311 on: October 08, 2007, 11:40:28 AM »

I had passed out about 2 and a half years ago from super low blood sugar. I woke up to find 3 EMT's standing over me. One of them, my husband later informed me, had started yelling him and blaming HIM for my blood sugar crashing! Yes, my husband can telepathically remove the sugar from my blood! He likes to see me passed out on the floor!  :sarcasm;
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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
********************************************************
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.
Adam_W
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Me with Baron von Fresenius

« Reply #312 on: October 08, 2007, 01:20:55 PM »

I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #313 on: October 08, 2007, 02:38:58 PM »

I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".

Adam

 :rofl; Maybe she thought you said scuba diving?
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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
KT0930
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« Reply #314 on: October 09, 2007, 05:07:46 AM »

I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".

Adam

WTF?? I'm going to wondering about that all day, thanks a lot, Adam!! LOL.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #315 on: October 09, 2007, 05:49:53 AM »

I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".

Adam

Yeah, I've been trying to figure out what word related to water sounds like dialysis since yesterday. I got nothing!   ???
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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
********************************************************
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.
Adam_W
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« Reply #316 on: October 09, 2007, 07:38:40 AM »

Naturally when it was too late, I figured I should have asked her what she meant by that comment. I haven't seen her at the store since, so that may forever be a mystery.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
George Jung
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« Reply #317 on: October 09, 2007, 08:50:43 AM »

So this is sad.  I am sitting in the chair (at dialysis) and I overhear a conversation next  me between a new patient and a nurse.  The nurse is inquiring about an intention to receive a transplant which the lady replies, "well I'm not sure, I thought dialysis would make me better."

I realize that this may have been a sudden onset but did nobody discuss anything with her in the hospital, surely she had to spend a day or so there before winding up in a unit.

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LightLizard
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« Reply #318 on: October 09, 2007, 09:33:45 AM »

on another site, a message board i had been frquenting since 2001, after diagnosis and treatment had begun for me, i was sharing my experience when certain individuals decided to inform me that my condition was due to wrong thinking.
another, rather bent person told me that he was going to put a curse on me, and he still continues to post a countdown to Oct 31, when, he says his 'curse' will be activated.

crazy people say crazy things.

love

~LL~
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KR Cincy
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Home hemodialysis since May 07

« Reply #319 on: October 09, 2007, 10:24:28 AM »

I've tried to chalk up all the frustrating comments to either a lack of knowledge about kidneys or a desire to want to say something positive and just stumbling. The sheer volume of people praying for me, adding me to prayer lists, sending me prayer blankets, etc. is, I realize, something they CAN do, and human nature is one (generally) of wanting to reach out and do something. So I set aside my personal religious beliefs, thank them and tell them "it must be working, I'm still here." Then I size 'em up and wonder how healthy their kidney might be...hehehehehehe
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Not giving up...thanks to Susan.
kitkatz
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« Reply #320 on: October 09, 2007, 03:53:27 PM »

LL did you tell them you had already been cursed with dialysis?
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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
KT0930
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« Reply #321 on: October 10, 2007, 05:06:44 AM »

So this is sad.  I am sitting in the chair (at dialysis) and I overhear a conversation next  me between a new patient and a nurse.  The nurse is inquiring about an intention to receive a transplant which the lady replies, "well I'm not sure, I thought dialysis would make me better."

I realize that this may have been a sudden onset but did nobody discuss anything with her in the hospital, surely she had to spend a day or so there before winding up in a unit.



There is an amazing lack of education when you're in the hospital for kidney failure (maybe other things too, but ESRD is my experience). I got sent home with a PD cath a year ago and NO education on how to care for it. On the other hand, if she had acute failure, it's possible that her kidney function would resume, but not BECAUSE of dialysis, just because that's the way acute failure works sometimes.

I agree, though, it's sad that she was allowed to begin dialysis with that impression.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
meadowlandsnj
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« Reply #322 on: October 14, 2007, 04:11:25 PM »

on another site, a message board i had been frquenting since 2001, after diagnosis and treatment had begun for me, i was sharing my experience when certain individuals decided to inform me that my condition was due to wrong thinking.
another, rather bent person told me that he was going to put a curse on me, and he still continues to post a countdown to Oct 31, when, he says his 'curse' will be activated.

crazy people say crazy things.

love

~LL~

Do you mind telling what message board this is? >:D

Donna :bandance;
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Jannie
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« Reply #323 on: October 14, 2007, 04:28:29 PM »

I found out I had kidney disease in 2001. They said I would eventually need dialysis. i told everyone at work. About six months later, one co-worker asked me "Are you sure you have kidney failure? You look so good and you haven't started dialysis."  I wish she could come to the center and sit with me while I lie there motionless with two needles in my arm.
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« Reply #324 on: October 16, 2007, 01:19:44 PM »

I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home.  I had already been transplanted and had previously been in the hospital with rejection.  This man was the roommate of the friend I was visiting.  When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney.  AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete."  He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!!  I've never been so insulted in my life!!!
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ESRD February 2002
Transplant from living non-related donor November 7, 2002
Lost transplant April 2005
Diagnosed with Heart Failure February 2006
Currently on Peritoneal Dialysis, awaiting to be well enough to FINALLY get placed
on the Transplant List.  :-)  I can't wait!!!!
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