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Author Topic: how do you answer this????  (Read 9372 times)
LightLizard
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« Reply #25 on: August 07, 2009, 03:24:45 PM »

well, i've decided that i don't want a transplant at all. my wife, only recently, suggested that she should be tested to see if we're compatible, kidney-wise. i won't have it. the problem with a transplant, as far as i can see, is the anti-rejection drugs one must take after the transplant. basically, shutting down the immune system is an invitation to all manner of diseases. i'll stick with dialysis, until an artificial kidney becomes available or stem cell research bears some edible fruit, thanks.
plus, how would you feel if something happened to your donor's remaining kidney after the transplant?
your boyfriend has stuck with you through a very trying time in your lives. that should account for a great deal i would think. there are many that wouild not stay around under such circumstances.
« Last Edit: August 07, 2009, 03:26:27 PM by LightLizard » Logged
dwcrawford
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Getting the heck out of town.

« Reply #26 on: August 07, 2009, 03:46:19 PM »

Ask if you must... but be prepared for his honest answer and keep in mind it may or may not be the answer you were wishing for.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
Goofy
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« Reply #27 on: August 08, 2009, 09:34:17 AM »

i agree with the people who think that its none of anyones business as to why he hasn't offered.  That's a very rude question.  I'm curious to know if it bothered you before that he didn't offer or did people start to make you think....yeah, why didn't he offer?  The only person to know that is him.  I would imagine if he felt comfortable telling you, he would.

I only have one sister who had a brain aneurysm so she can't donate.  My husband has a very large family.  We've been married 33 years, yet no one in his family has ever offered or even said they'd like to.  It has bothered me for a long time.  I've done so much for his family and it really hurts me that no one seems to care about me.

I've really had to work on getting that out of my mind.  I started treating everyone differently; I found myself withdrawing from him family and then I thougt about it.  I can't be upset with anyone.  Donation is a BIG decision.  I'm sure everyone has their reason why they don't offer. 

So unless you ask him about it, I would try to get it out of your head.  I believe it will only bring bitter feelings.  Next time someone asks why he doesn't get tested, just tell them.........."I'm not sure.  Why don't you ask him."
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Phraxis
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« Reply #28 on: August 08, 2009, 04:40:03 PM »

Two isssues wrapped up in the thread. "Why he has not been tested" and responded to people who ask questions that are at best awkward and likely rude. The later is easier. I suggest saucey humour like "O he asked if he should get tested and I told him that his bedroom performance was perfectly 'adequate'", or It has taken him six years to propose so we are all being quite patient . . . etc.

It is like when people try to hug kids in a wheel chair  -- they may be well meaning but they just need to censor their behavior a little.

As for that other subject, the answer to your own question. The only person that can answer that is your boyfriend. Depending on how you both deal with such things i.e. should we sleep together, do we want to get married, do we want to combine our finances. Some people involve a friend, or just barge in and let emotions fly. The complication lies in the lack of model to follow  -- few have been around the situation nevermind comtemplated how they should react. Movies aplenty about how to propose to the love of your life but there are few referances for the "I am terrifed of giving up a kidney and then finding out I needed it . . . but I don't want my Princess to think her knight is shining armour is a coward."

I think alot of conversations are going to start with the movie "My Sisters Keeper" -- great movie by the way.

On a very personal note, doubt is a very nasty corrosion, I would suggest a conversation should happen soon. It is better to clear the situation up. It may end a great relationship or it may expose problems that were previously overlooked, allow a healing and both of you to move onto a life together.
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dwcrawford
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« Reply #29 on: August 08, 2009, 04:54:39 PM »

Excellent response from Goofy.  Maybe she's not that goofy after all.  Tread softly when asking for advise.  Remeber the old expression as opinions?
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
del
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« Reply #30 on: August 08, 2009, 05:33:52 PM »

well, i've decided that i don't want a transplant at all. my wife, only recently, suggested that she should be tested to see if we're compatible, kidney-wise. i won't have it. the problem with a transplant, as far as i can see, is the anti-rejection drugs one must take after the transplant. basically, shutting down the immune system is an invitation to all manner of diseases. i'll stick with dialysis, until an artificial kidney becomes available or stem cell research bears some edible fruit, thanks.
plus, how would you feel if something happened to your donor's remaining kidney after the transplant?
your boyfriend has stuck with you through a very trying time in your lives. that should account for a great deal i would think. there are many that wouild not stay around under such circumstances.

Lightlizard that is exactly ow my husband feels!!  He has been on dialysis for 12 years now.  he is very lucky to me doing so well. He is not having any problems at all and nocturnal home hemo is working really well.  He doesn't like the diet of anti rejection pills and the possible side effects either.  I was tested when he first started dialysis and was found to have the same blood type and a 1 out of 6 antigen match. He thought about it but said no - he was afraid something would happen to me!!  Right now he is feeling so well that he doesn't see the point of even going on the transplant list.  The nephs have agreed with him. One even said why fix something if it is working ok!! 

To donate a kidney has to be a personal decision.  The support he is giving you shows that he cares. He could just as easily have ran the other way as soon as he found out you had kidney failure.  Talk to him and tell him you appreciate his support but don't push him into being tested for a donor.  That has to be his decision.  If he doesn't want to be tested he may have veryu good reasons and it doesn't really matter what they are. 

I agree people are asking a very rude question.  It is none of their business!! 
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Don't take your organs to heaven.  Heaven knows we need them here.
dwcrawford
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« Reply #31 on: August 08, 2009, 05:40:44 PM »

OMG, I think I agree with Lizard too.  Hush, don't tell anybody.
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Come to think of it, nothing is funny anymore.

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Goofy
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« Reply #32 on: August 08, 2009, 09:18:02 PM »

Thanks dwcrawford!  I'm not really as goofy as some people think I am!

Right now I say the only person that I would take a kidney from is my husband but he is boarder line diabetic and has high blood pressure so he is out.  Both my children want to be tested but I said no.  I'm afraid one of them might have PKD and will need a kidney at some point.  I'd rather they save theirs just in case!

I often wonder that if someone I knew needed a kidney, would I offer? 



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RichardMEL
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« Reply #33 on: August 09, 2009, 12:29:30 AM »


I often wonder that if someone I knew needed a kidney, would I offer?

Fabulous question and one that I think is pertinent to this discussion. It's all very well for those of us who need a transplant to sit back and expect/ask others to stand up and donate - but what if the tables were reversed??? I'd like to think I would put my hand up.. but if I am 100% honest with myself I don't know if I would. I know that the whole kidney disease journey has made me a more generous soul - maybe if I didn't have that I may not be so considerate and giving.. I do not know. I think definitely if it was a family member that needed aht I was a chance to donate I would put my hand up... but it's not a situation I'll ever be in so I guess that's not an easy one to answer.

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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!
dwcrawford
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« Reply #34 on: August 09, 2009, 12:45:18 AM »

I'm pretty sure I would't have volunteered before.  I didn't really know much about kidney problems till late last year.  I think the answer is broader education and awareness.  I don't like at all the thoughts of wanting a relatives or friends kidney.  If they offer, fine, love them for it, but "thou shalt no covet another man's kidney"  Isn't that number 11? I do  like the idea of encouraging organ donations (unless relitious beliefs prohibit it.)  I just hope somebody can use one of  mine -- or maybe they can take the kidneys for use in research (what not to do).  The skin is a little saggy, but I figure they can stretch it out in the burn unit since the plastic surgeon said it is too late.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
LightLizard
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« Reply #35 on: August 09, 2009, 10:00:08 AM »

I'm pretty sure I would't have volunteered before.  I didn't really know much about kidney problems till late last year.  I think the answer is broader education and awareness.  I don't like at all the thoughts of wanting a relatives or friends kidney.  If they offer, fine, love them for it, but "thou shalt no covet another man's kidney"  Isn't that number 11? I do  like the idea of encouraging organ donations (unless relitious beliefs prohibit it.)  I just hope somebody can use one of  mine -- or maybe they can take the kidneys for use in research (what not to do).  The skin is a little saggy, but I figure they can stretch it out in the burn unit since the plastic surgeon said it is too late.

 :clap; my sentiments too. scary that we have something in common, hey?
 :beer1;
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paris
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« Reply #36 on: August 09, 2009, 10:42:21 AM »

I am marking this day in red letters.  DW and LL agree   :2thumbsup;   I love you both   :cuddle;
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« Reply #37 on: August 09, 2009, 10:53:01 AM »

 :bow;  you said it Paris!
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« Reply #38 on: August 09, 2009, 10:58:12 AM »

Goofy, our daughter went in to be tested for PKD so she could see if she could donate a kidney to her dad. Unfortunately, she does have PKD, and it is affecting her liver, too. But now she knows.

Dan and LL, wonders never cease!  :2thumbsup;

Aleta
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Wife to Carl, who has PKD.
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Carl transplanted with cadaveric kidney, February 3, 2011. :)
LightLizard
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« Reply #39 on: August 09, 2009, 11:00:45 AM »

the bottom line is that we are all in the same leaky boat, and differences of opinions, beliefs and views aside, we need each other.
 :flower;
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dwcrawford
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« Reply #40 on: August 09, 2009, 11:07:32 AM »

But lets avoid the discussion of clinical depression....
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
LightLizard
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« Reply #41 on: August 09, 2009, 11:22:51 AM »

and religion and politics.
 :thumbup;
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dwcrawford
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Getting the heck out of town.

« Reply #42 on: August 09, 2009, 11:23:50 AM »

don't worry.  never discuss those anyway. 
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
LightLizard
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« Reply #43 on: August 09, 2009, 11:26:15 AM »

 :2thumbsup;
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del
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« Reply #44 on: August 09, 2009, 12:11:23 PM »

the bottom line is that we are all in the same leaky boat, and differences of opinions, beliefs and views aside, we need each other.
 :flower;

Differences of opinion is what makes life interesting!!!  Be pretty boring if we all thought alike!!  :flower;
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kitkatz
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« Reply #45 on: August 09, 2009, 12:14:22 PM »

Back to on topic....

I think maybe the boyfriend thinks you need him as he is, also he may no t have even given it a thought that he could give a kidney to you.  Maybe talking to him would help.

Personally if you all are happy, do not allow other people and their comments to get to you. You both have to right to your privacy especially when it comes to  kidney transplant.
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

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« Reply #46 on: August 09, 2009, 07:02:38 PM »

I think we all have asked that question about everyone that loves us. 

My husband loves me as much as humanly possible, but he wouldnt donate a kidney to me.  His mother had diabetes and kidney failure and I think in the back of his mind he thinks that might be in his future also.  He is saving his kidney for himself as long as I appear ok. 

It is not a sign that someone doesnt love you enough.  It is a fear that they have for some reason or other.   
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PD started 09/08
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Failed donor transplant-donor kidney removed,
suspected cancer so not used 06/17/09

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« Reply #47 on: August 09, 2009, 08:03:55 PM »

My wife wants to donate to me, but I do not want to. I need her to take care of me and I don't want her to take this risk. It turns out she cannot donate due to medical reasons anyway.

If not feeling comfortable to ask BF for donation, maybe give him a good article to read. There are many such good articles about spouse donation to each other or BF or GF donation. After reading the article, it would be easier to start the conversation.
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Brightsky69
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« Reply #48 on: August 11, 2009, 02:59:21 PM »

 I have never brought it up to him about why he hasn't gotten tested. Maybe part of me doesn't want to put him through it either and that's why i don't bring it up.

When my mom donated to me she told me she was gonna do it. She said it was no different than if I had the flu and she had to stay up all night with me. She was gonna do whatever she had to do to get me healthy again.
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Transplant June 11, 1991 (1st time) my mom's kidney
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« Reply #49 on: August 11, 2009, 03:02:23 PM »


   "thou shalt not covet another man's kidney"


 ;D  :2thumbsup;
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Jenna is our daughter, bad bladder damaged her kidneys.
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