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gothiclovemonkey
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« on: May 28, 2012, 12:06:19 PM »

I never really thought about this but... someone the other day had asked me if anyone has offered to give me a kidney, which some have but i never heard any more about it lol
I made a fb page saying that i need a kidney, but i almost feel like im begging... so i stopped posting about it.
I make passive statements around people i know (like my family) that I really wish I had a kidney, but they ignore it... Not surprised there. The one person who wants to give me a kidney cant due to his health *my super awesome father*
but then i started thinking about the fact the my bf hasnt once even mentioned it, infact he rarely even says anything reguarding my health issues... except things like, are you ok? how are u feeling? type statements.
Is this normal? i mean, ive had a complete stranger even say they would like info  on how to donate (probably just being nice but still at least they said something!)
am i just being silly? or does that seem strange?
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« Reply #1 on: May 28, 2012, 12:16:51 PM »

The thought of donating can be VERY scary for some folks. We had a wonderful friend who started the process of donation, but then realized that she had such a fear of medical procedures that she could not go through with it. She is still a dear friend.

There may be all sorts of reasons why your BF has not said anything about donating. If you are comfortable with talking about it, you might ask. If not, I would leave it alone. If he decides to go through donation one day, you will have reason to celebrate.

 :grouphug; :grouphug;

Aleta


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Wife to Carl, who has PKD.
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MooseMom
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« Reply #2 on: May 28, 2012, 12:17:51 PM »

While I do not believe that anyone has a legal obligation to offer to donate, I do feel that in some very specific cases, there is an implied moral obligation.  And maybe "obligation" is the wrong word.  If my child needed a kidney, I wouldn't feel obligated, rather, I'd feel compelled; there would be no question.  I personally believe that there should be the same compulsion when it comes to your spouse.  If you are physically able to donate to your spouse but choose not to, I can't help but wonder if there is something fundamentally wrong there.  I can't imagine choosing not to save your spouse's life if you possibly can.

I do want to make clear, though, that if you ineligible to donate, you should NEVER feel guilty about that because there are so many other important ways that you can support your spouse on dialysis.  I know there are many caregivers here who would donate in a heartbeat if they could. 

So, GLM, in my very humble opinion, I personally think it is weird that your bf has never mentioned at least a willingness to be tested.  He may have a valid reason for not wanting to, but he should talk to you about it.  Once you decide to share your life with someone, to me that implies a certain desire to make that person happy.  I cannot imagine watching someone struggle with dialysis and choosing not to help if I possibly could.  Does he understand that one doesn't have to be a family member to be able to donate?  What HAVE you told him about tx?  Sometimes people can be so clueless, and it is up to us to educate them.

If he understands enough about dialysis and tx and still does not even want to discuss your options, to me, that's a red flag.  But I'd be very interested to hear what others have to say.
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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."
MooseMom
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« Reply #3 on: May 28, 2012, 12:28:26 PM »

The thought of donating can be VERY scary for some folks. We had a wonderful friend who started the process of donation, but then realized that she had such a fear of medical procedures that she could not go through with it. She is still a dear friend.

It's absolutely OK to back out because of fear.  I would be so grateful for anyone who even CONSIDERED donating!

Quote
There may be all sorts of reasons why your BF has not said anything about donating. If you are comfortable with talking about it, you might ask. If not, I would leave it alone. If he decides to go through donation one day, you will have reason to celebrate.

All of this is so true.  However, I personally would not choose to share my life with someone with whom I felt uncomfortable talking about what it might take to SAVE MY LIFE.  I could not live with myself knowing that I could possibly donate a kidney to my loved one but chose not to, and I would hope that my loved one would feel safe enough to talk to me about it.  I could not stand by and watch someone suffer on dialysis and not even be arsed to either discuss it or get tested. 

I'm sorry if my comments are way out of line, and maybe they are colored by the fact that I need a kidney.  I did have one offer from someone who had to withdraw it because of the objections from her husband, and I was just grateful that she even thought about it.  I didn't feel bitter at all.  It took a lot of courage from her to have to tell me should couldn't go through with it, and I respect that.  I respect courage.  It is not very courageous to just sit by and ignore the health issues of someone you supposedly care enough about to want to live with.  But then that's just my own personal measurement.  GLM, if you can live with this guy and not resent the fact that he seems to seem to be so blase about your renal failure, then I admire you.  I'd be seething, and that's not something I'm particularly proud of. :P

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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."
gothiclovemonkey
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« Reply #4 on: May 28, 2012, 01:35:32 PM »

oh moosemom i love that you arent shy about ur answers!!!

I dont know his reasoning, but hes been around me talking to others about it. And I have said how much i wish i could find a kidney, and he says, I know baby....

I personally dont believe anyone should feel obligated to give me life, but at the same time, even just saying they would think about it, at least thats something....
im not afraid to say something really, its more that im afraid of his answer if i asked and he said flat out No, how would i take that??

Ive had a few people offer to get tested, i give them info and hear nothing from them again, and thats fine, at least they asked about it and i could inform them, in case one of their family members is in that position, they will know.
Ive also had a friend tell me they dont want to because kidney probs run in their family, so they wouldnt want to risk it, and end up where i am. I totally understand that.
But, i feel like you, MM, that if he can say he loves me so much, the least he could do is lie to me and say his blood type isnt right... (even though he knows about paired exchange... if he was listening when i told him about it..) LOL
Id give every organ i had to someone i love. It kills me I cant give my father a heart, as much at it kills him he cant give me a kidney... (his heart isnt failing, yet, but its not working right and the surgery to fix it would kill him.) If my bf needed an organ that i could give him, id do it. and id even do it for a complete stranger too...
In all honesty, he probably wouldnt be eligible anyway, since hes boarding on the heavy side im not sure what the cut off is for that...
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lainiepop
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« Reply #5 on: May 28, 2012, 01:39:40 PM »

Hmm guess it depends on the people. In my situation i didnt ask, i assumed my husband of almost 7 years who i married at 23 and have had 2 kids with would just donate, which of course he assumed he would too. I think i wouldve been hurt it he hadnt even wanted to offer!Then i discovered my parents even tho 66 and 65 weren't to old to donate so just told them that and that was that, they were both a match , dad slightly better so im getting his kidney tomorrow (ahhh!!)

Other people offered too, my daughter and son's godmothers both offered, but i wouldnt have accepted as neither have kids altho they insisted if nobody else was a match they would. And my sister is my age with 5 kids, family done was quite blase about it said she would do it if needed, not like she needs 2! I was shocked and moved tbh. Only other person i spoke to (not to ask but just about my situstion) was my husbands brother who told me quite matter of factly he would never donate a kidney to anyone not even a family member, which shocked me tbh, prob cos others have offered. My dad told me the other night that my hubbys mum said she thought he was very brave and amazing to donate to me (at my daughters christening), dad replied well its what anyone would do for their child and she said no not everyone would, i already had the impression its not something she'd do and i dont think she'd have been happy had my hubby done it really.

So i guess people are all different, but personally id pretty much expect my parents and hubby to want to do it.I dont have siblings. Have u broached the subject with him? Like about getting a kidney in general, how long the wait is, how much better a live donor would be etc etc and see if he gets a hint?! (bearing in mind men are useless at hints you might need to write 'organ donation??' on your head  :rofl;

Marie xx

Ok i just read moosemoms post she said what i wanted to say but better :)
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1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
okarol
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« Reply #6 on: May 28, 2012, 01:44:16 PM »

I could never ask anyone.
But I keep telling Jenna's story.
Her first donor found her!
It was a kind soul who wanted to help someone.
More and more people are sharing their stories on facebook, craigslist, and on livingdonorsonline.org (That's where Jenna's donor for her story, in the "looking for" section.)'
As Jenna's function declines we are getting ready to make a new facebook page.
The wait in Los Angeles for a deceased kidney is now 10 years for O blood type.
A living donor, if we find a match (high antibodies will make this nearly impossible) could happen much sooner.
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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 -
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MooseMom
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« Reply #7 on: May 28, 2012, 01:55:15 PM »

GLM, believe me, I understand your fear that he might simply say "no" if you asked.  I do understand that perhaps we should not ask questions if we fear the answers.  I think you are very smart in wondering how you would cope with such an answer.

And it is entirely possible that he may be afraid of offering but then being denied, thus disappointing you.  Maybe he suspects he would not be eligible because of his weight, and so maybe HE doesn't want to hear "no".  There could be a lot of things he is thinking about but feels uncomfortable sharing with you.  But the sticking point is exactly that...the not sharing part, you know?

To be clear, I do not believe that my husband is obligated to donate to me (he's ABO incompatible AND he's frankly afraid that all of the requisite tests he'd have to endure might uncover something scary!), but I DO feel he is obligated to do something other than just ignoring the situation, you know? 

I wish I could be more noble and keep talking about how no one is obligated to do anything at all...talk, get tested or donate.  But there is a part of me that is truly baffled by people who do NOTHING to help someone they profess to love.  You and I have had this conversation before, and I think we are in agreement.

I hope that you find some way to be at peace with how things are between you and your bf in this regard.  If you decide to just leave it alone, I hope you can find peace in that.  I could not, to be honest.  Sometimes I get annoyed that my husband isn't really doing what it takes to lose weight so that he could be eligible to donate, but really I am more annoyed that he doesn't take better care of himself, thereby leaving himself at risk for stoke or heart attack, and if that happens, I'll be the one to have to pick up the pieces, you know?  LOL!  The miminum he could do for me is to keep himself healthy so that I won't have one more person to worry about!  But we have at least talked about it and I know his reasoning, so I'm not just left wondering like you have been just left wondering.

Please let us know if you two reach the point where you can have an honest discussion about this.  In the meantime, I guess you should just try to enjoy the ways he DOES help! :cuddle;
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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."
gothiclovemonkey
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« Reply #8 on: May 28, 2012, 02:10:53 PM »

ill probably mention it, again, passively just to see what he says about it....

people are strange, and i can understand the fears, but its scary for us knowing theres no cure...

i have told him about it, but that doesnt mean he was listening LOL
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jeannea
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« Reply #9 on: May 28, 2012, 03:23:14 PM »

I don't know. People can have all sorts of reasons not to donate. Maybe he's afraid he'll die. Or maybe he wants to be able to take care of you after your surgery rather than both of you feeling bad.

My brother never offered to be tested. I think he has a secret that would keep him from donating and he's afraid I would find out when they deny him.

I think if you have a good relationship this shouldn't end it. Good men are hard to find. But an honest conversation could be helpful to both of you.
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ReneePa
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« Reply #10 on: May 28, 2012, 03:33:23 PM »

ill probably mention it, again, passively just to see what he says about it....

people are strange, and i can understand the fears, but its scary for us knowing theres no cure...

i have told him about it, but that doesnt mean he was listening LOL

GLM,
I would ask him point blank.  Maybe he's afraid to talk about it.  At least he would know where you're coming from. 
You are a fabulous lady!  I miss seeing you all the time!  I can't wait for the day when I go to the "other side"  ;D and find out that you got your kidney!

Renee
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LarryG
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« Reply #11 on: May 28, 2012, 03:36:22 PM »

I never directly asked anyone that I needed a kidney. What I did was made it known that I was in need of a donor by presenting the question. It is hard to ask someone for such a sacrifice and it has to be with free will and giving. I do believe there is a donor for everyone out there just the right circumstance has to fall your way and the right time and place. Through extra ordinary means I found a donor an unknown caring and altruistic person and if you place yourself and remain determined I believe it will happen.

Larry G.
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gothiclovemonkey
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« Reply #12 on: May 28, 2012, 04:00:26 PM »

ill probably mention it, again, passively just to see what he says about it....

people are strange, and i can understand the fears, but its scary for us knowing theres no cure...

i have told him about it, but that doesnt mean he was listening LOL

GLM,
I would ask him point blank.  Maybe he's afraid to talk about it.  At least he would know where you're coming from. 
You are a fabulous lady!  I miss seeing you all the time!  I can't wait for the day when I go to the "other side"  ;D and find out that you got your kidney!

Renee

Didnt you hear, im not at CU Dialysis anymore? I moved! AND im doing PD NOW! (no thanks to sehy!)
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okarol
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« Reply #13 on: May 28, 2012, 09:16:04 PM »

Have you read Epoman's story about asking?
"RANT TIME: I always knew the "answer" but I just never asked, WELL I DID AND.."
http://ihatedialysis.com/forum/index.php?topic=1588.0
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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
gothiclovemonkey
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« Reply #14 on: May 28, 2012, 10:07:10 PM »

that is the saddest thing :(

I actually got in a our first "big" fight tonight (it really wasnt that big, but there was a HUGE misunderstanding and i thought he broke up with me over it...)
so while we were getting some things out in the open, i thought, what the hell, i want to know. so i told him that thee was a thread on here about relationships, and how we have never really discussed the fact that i do dialysis. i mean, he knows that im on it and stuff, but we never really talk about it in depth, and he said well one reason we dont talk about it, i look stuff up online when i want to know the answer. And he started spouting of stats that most people wouldnt know right off. (impressed!) and  then i mentioned, nonchalantly, how quite a few people on here have given their spouses their kidneys and he said, really? i would totally do that if we were a match....................................................................
he doesnt know his blood type.

that really made me feel alot better, even if he hadnt said he would dontate,  the simple fact hes googled dialysis and learned enough about it to tell me some of the things he did, i started bawling.... hes the first bf ive had to do that.

i dont really want to put him thru that anyway really, it would be awesome to have a kdiney, but it would be a pain in the butt to have us both ill at the same time. its just the thought that really counts....
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jeannea
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« Reply #15 on: May 29, 2012, 09:10:15 AM »

He sounds like a good guy who cares about you. Keep him.
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MooseMom
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« Reply #16 on: May 29, 2012, 09:55:45 AM »

And this is why it is good to talk about things that are bothering you. :cuddle;  It's unfair to assume that you know what he is thinking...or not thinking.  He deserves the chance to explain, and I'm glad you gave him that chance.
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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."
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« Reply #17 on: May 29, 2012, 06:28:41 PM »

ill probably mention it, again, passively just to see what he says about it....

people are strange, and i can understand the fears, but its scary for us knowing theres no cure...

i have told him about it, but that doesnt mean he was listening LOL

GLM,
I would ask him point blank.  Maybe he's afraid to talk about it.  At least he would know where you're coming from. 
You are a fabulous lady!  I miss seeing you all the time!  I can't wait for the day when I go to the "other side"  ;D and find out that you got your kidney!

Renee

Didnt you hear, im not at CU Dialysis anymore? I moved! AND im doing PD NOW! (no thanks to sehy!)


Where did you go???  Across the street???  I didn't know!  I hope it goes well for you!! 

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gothiclovemonkey
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« Reply #18 on: June 04, 2012, 04:22:45 PM »

I moved to Clinton illinois, so my drs and such are in Decatur, and im doing PD from there.
I love my new drs, but i miss u all at CU D!
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