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Author Topic: So, I finally changed my mind  (Read 6361 times)
Jess21
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« on: January 21, 2009, 07:13:47 AM »

Ever since I got sick over a year ago, my boyfriend has wanted to get tested to donate a kidney.  I was dead set against it, or anyone donating in that retrospect (though no one else has offered).  So I went on "the list" to wait.  So Monday I suddenly had a change in heart, and decided to let him get tested.  I printed out the "Donor Questionairre" for him to fill out yesterday.  Once he fills it out, all I got to do is fax it to my transplant coordinator, and we'll see what happens from there.  He took the form home to show his parents (even though his mom was dead set against it when he brought up the idea a year ago).  Yet, he is 24 so he says no matter what they say he's still going to try.  He says he's doing it so I have a better quality of life and get my dignity back ("No more "sorry I have dialysis 3x a weeK" " he says.).  It'll be good if it does work out, takes a lot of uncertainty out of life when looking for a job in July.  I'm AB+ I believe, he's A+, but he also had a lot of transfusions when he was born (6 weeks early), so I don't know what the antibody situation will be.  We shall see.
 :waiting; :waiting; :waiting;
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
paul.karen
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« Reply #1 on: January 21, 2009, 07:22:21 AM »

:-)

I hope that it will work out for you both.

I am glad that you at least decided to give it a go.  If he didnt care about you he wouldnt offer such a gift.  Heres hoping for a good match  :beer1;..
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Curiosity killed the cat
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Operation for PD placement 7-14-09
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willieandwinnie
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« Reply #2 on: January 21, 2009, 07:24:23 AM »

Good for you Jess. Keep us posted and I hope he is a match.  :cuddle;
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« Reply #3 on: January 21, 2009, 08:01:48 AM »

 :thumbup; Good luck Jess!
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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.
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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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« Reply #4 on: January 21, 2009, 09:04:15 AM »

Good luck, Jess!
I'm glad that you changed your mind and let your boyfriend be tested.  As a living donor myself (to my husband in 2000), I can tell you that it is a soul-changing experience for the donor, too.  I'm glad you're agreeing to not deny him the opportunity to do something absolutely wonderful.
Let us know.
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Lori1851
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This is me Lori , Dustin's mom

« Reply #5 on: January 21, 2009, 09:31:38 AM »

Jess,
I am happy for you. Hug your b/f for me! Donors rock!!!!! :cheer:
My son was like that with his best friend was leary about him donating. Dustin never got the chance to get his new kidney so honey YOU GO FOR IT!!!!

Lori/Indiana :yahoo;
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rose1999
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« Reply #6 on: January 21, 2009, 09:33:26 AM »

Good luck, you have a boyfriend in a million, I hope it works out for both of you  :flower;
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Rerun
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« Reply #7 on: January 21, 2009, 10:22:33 AM »

If you match he will have some decisions to make.  If you don't match then you go on waiting.  So for now there is no pressure.

Best of luck.
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MandaMe1986
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« Reply #8 on: January 21, 2009, 10:45:24 AM »

If that is what you decide, that awesome. I hope it works out for you two.  I really do. 

If you don't mind me asking, what was it that made you change your mind?  I have been dead set on not letting anyone give me a kidney for a really long time.  I don't know if I could ever change my mind.  Granted I haven't started diaylsis yet.  So that might change my mind later on.  But I was just wondering.  Cause sometimes I think its stupid of me to be like that, but then I trun around and think that it is just something I can't do. 

But I do really hope it works out for ya.

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Blessed are the poor in spirit, for theres is the kingdom of heaven.
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« Reply #9 on: January 21, 2009, 11:14:24 AM »

I hope all goes well mate

 :flower; :flower;
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paris
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« Reply #10 on: January 21, 2009, 12:20:12 PM »

I know it took a lot of thought to come to this decision.  We'll all be anxious to see how the testing goes.  Tell him we love him!! :cuddle;
« Last Edit: January 21, 2009, 12:26:04 PM by paris » Logged



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thegrammalady
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« Reply #11 on: January 21, 2009, 12:23:27 PM »

the one thing you are definitely entitled to is to change your mind! best of luck. now we'll all just wait and see what happens.
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kellyt
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« Reply #12 on: January 21, 2009, 01:53:08 PM »

I had only made the decision not to ask anyone to test for me.  I figured if someone offered I would give them my Coordinator's number and let it go from there, which is what I did with the offers.  I, too, was pre-dialysis, so my decision to not ask might very well have changed later down the road.  I cannot say for sure.

Even though in the beginning I wanted more than anything to get my husband's kidney (what a great story of love, etc.), after going through the surgery and recovery I was so grateful that it wasn't him.  Both of us down would have been a nightmare.  Plus, my husband has never been one to take it easy after an illness or surgery.  He would have driven my crazy by not taking it easy!

I love my donor (sister-in-law) more now than I ever thought possible.  She is my REAL sister now.  Her blood runs in my veins and our kidney keeps me alive and off dialysis.  There is no greater appreciation in my eyes!

For Christmas I got her a beautiful Brighton watch.  I wrote on the card   "Since you bought me time I thought I would buy you time".   She loves the watch!

Good Luck with the testing.  It will happen the way it is supposed to happen.    :cuddle;
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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
RichardMEL
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« Reply #13 on: January 21, 2009, 03:46:04 PM »

Jess you're totally within your rights to make whatever decision you want. I can understand not wanting your BF to donate for many reasons. I once had an ex-gf offer to donate (this was back in the 90's when we were together and I had been diagnosed) and I know I felt funny about it. As it turns out the relationship didn't last that long and although she had always said "no matter what" and appeared to mean it there's no way I would have gone back and asked anyway (as it turns out we're different blood groups anyway). I'd say though that your bf's offer to donate shows real strength of character and he's clearly had time to think this through. Plus you've been together for quite some time so it seems to be a solid relationship (that part upsets me!!! hehehe just kidding  :rofl;) and like Tamara & Allan it could be such a special gift between the two of you. Even if it doesn't work out he's seen all sides of you having to deal with ESRD and dialysis and he wants things to be better for YOU. What a great guy!!!

As others have said it's totally also within his rights to change his mind should he get into the testing and decide not to.. doesn't sound like he will. Let's just see how that goes and fingers crossed.

I won't ask you to give him a hug for me, but I will definitely send him a  :2thumbsup; and one for you too. You have to do what is comfortable for you in your heart and mind....
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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!
G-Ma
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« Reply #14 on: January 21, 2009, 04:32:06 PM »

Saul and I were together before this damn kidney thing so he knows it """all""" and he offered and I said NO. For reasons I can't explain I don't want a living donor and I also know many in his family have diabetes and complications so he needs to stay as healthy as possible.  It was very wonderful for him to even offer tho.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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« Reply #15 on: January 21, 2009, 05:42:31 PM »

I too didn't ask or go beggin for a kidney and my donor's family was totally against him donating but he said he had made his mind up and nothing they said would change it.
thats great that you changed your mind  to let your bf test to see if he is a match..both of you will be glad you did!! my donor and i were already real good friends but this made us a lot closer  way more than i could imagine!  I hope this works out for you and most of all ...no more dialysis!!! God Bless!!
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11/10/07 esrd
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transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
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« Reply #16 on: January 21, 2009, 06:21:51 PM »

Good luck!!!  My fingers are crossed for you.
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Jess21
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« Reply #17 on: January 21, 2009, 07:46:25 PM »

There will be no testing. :'(
Wasn't meant to be..
His parents talked to him, and his mom said she had a kidney problem when younger, and with all he went thru being a premie, if he gave a kidney he would die.  While I know that probably is a lie, I know he had many a problem when he was born (died twice) so who knows WHAT went on.
I was dissapointed.  Upset.  Angry.  I hate making myself vulnerable.  Really really do  >:(
But I realize everything happens for a reason.  Now, atleast he can't complain I wouldn't let him.
Annd..when I do get "The Call" he'll be waiting there when I wake up!!!!
He's a baby for pain anyway!  :rofl;
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
kellyt
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« Reply #18 on: January 21, 2009, 08:05:15 PM »

Good attitude.  You'll get the kidney that was meant for you.   :cuddle;   And, yes, I believe he will be there for you when it happens.  He really cares for you!

I think I would all of a sudden become extremely interested in his mother's "kidney problem".  I mean, ask her lots of questions like you truly want to know and are concerned.  Sounds like B.S. to me, as well!  It's fun watching liars squirm!   :clap;
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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
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« Reply #19 on: January 21, 2009, 08:18:08 PM »

Great attitude Jess...I would also want to know family history if there are children in the future or even if he gets ill sometime in the future.  I make sure my sons and their wives have all info and records just in case.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
paris
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« Reply #20 on: January 21, 2009, 08:29:07 PM »

Jess, being vunerable is very hard.  He did what to be tested and I think that was good.  I am sorry.  Love you,sweetie   :cuddle;
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RichardMEL
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« Reply #21 on: January 21, 2009, 11:51:14 PM »

My initial reraction which may be totally unfair is that his mother is clearly pushing her own agenda and SUGGESTING that because he was prem and because of her "problem" he'd die by donating. Now we already know she was against the idea in the first place, so she's had time to think up good reasons for him to not do it. The thing that bothers me I guess is that your bf has essentially rolled over (or appears to have based on what you've said) and accepted mom's word as gospel.

As we all know the transplant team would check into ALL of that sort of stuff as part of the testing. If there was even a remote chance of something going wrong with the donation they simply would not proceed and reject him on those grounds. One of the key parts of the donor evaluation is the mantra to "do no harm" to the donor.

If I had the ear of this young man I'd say to him that rather thsn accepting what mom says - which may well be a real rather than imagined fear - if he REALLY wants to donate then shouldn't it be his decision to get tested? If there's a potential risk to him the team will soon discover it and the donation won't happen.. but if it's more of an imagined fear than reality he may still be able to donate - if it really is his wish to do so.

I'm sorry you're disappointed Jess :( it seems to that parental pressure has been brought to bear... and like you said he's a baby for pain... )

hang in there hun  :cuddle; :cuddle; :cuddle;
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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!
Wattle
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« Reply #22 on: January 22, 2009, 01:19:51 AM »

Jess I am sorry it didn't work out.  :cuddle;

Try to maintain your relationship as if it wasn't discussed. I know you will find it hard around his parents. I am sure they love you and would want to see you as healthy as possible, they are just being protective parents.

I too had a live donor go all the way through the testing process, pass and surgery date set only to then back out. She backed out due to her overbearing mother having control over everything. At the time she was 40 years old and far from being a child. I don't blame her for it, it just wasn't meant to be. Her mother was a piece of work that turned on me to the extent of verbal abuse. She blamed me for her daughter wanting to donate and believed I should have talked her out of it. I have never really gotten over the attack and have felt differently about live donation since.

 :grouphug;
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
RichardMEL
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« Reply #23 on: January 22, 2009, 04:56:39 AM »

Gee Wattle that's horrible! I'm so sorry to hear that  :grouphug;

It's funny how in both instances it appears that one person's generous and selfless intent has been, in essence, pushed aside by someone else's actions that some could argue are selfish in the extreme. I can totally understand a parent (or spouse) being concerned about their loved one's decisions and caring for their wellbeing but it astounds me that some people act like that specially when the testing process is pretty in depth and they'd pick up any risk and all that.

However at the end of the day we must remember that it is the donor's perogative to change their mind - even if it is at the last minute. A organ donation should be a gift given freely and not under duress of any sort.

I'm still sad at both Jess and Wattle's stories and can understand it would put you off potential future live donations. In a way I guess I personally am glad that I'm out of  potential live donors because in a way it is easier to deal with the concept that if the donation happens it's not up to anyone else except the medical powers that be, and me and as tragic the situation would be for the donor's loved ones would be hopefully though the positive aspects would come through in time.

 :grouphug; :grouphug; :grouphug;
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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 #24 on: January 22, 2009, 05:51:07 AM »

Jess I don't see you being put as being vulnerable, it takes courage to reverse a decision like that. God works in mysterious ways, and if he donated his kidney to you and something bad happened to him you would never have been able to accept that. Garth Brooks said it best in the song "I thank God for unanswered prayers" ;musicalnote; ;musicalnote;
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