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Claudia30
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« on: January 13, 2008, 04:09:28 PM »

hi everyone. Just posted a question on the work site if you have a chance please look at it. Question though.- need help repsonding to this situation. Was out with a friend the other day (some might say she really isn't a friend but we have been for about 20 years). Anyhow we were driving along and i was telling her about the resourecs online about ESRD and how i plan on getting involved with tranplants and such. Well i said to her "i'm assumign that you don't want to donate right?" she yelled at me and said "they are mine you mothereffer!" i said i'm sorry but why wouldnt' you want to help someone live, its not agaisnt any religion and you can still have the funneral you want. she yelled again at me and repeasted what she had said. When i talked to her 3 years ago if she woudl get tested, she said no and we left it at that. Funny she seemed more grown up at that time and now it seems like she had reverted back to a kid. She won't listen to anythign i have to say about organ donation. She knows m y situation and knows that i could die without a transplant but doesnt' believe that it is her duty to do anythign for anyone else. I'm not asking her to donatem to me, i'm just asking her in general. She also claims that she is very catholic - which i don't think she is cuase i believe that even if you dont swear but are thinking it it is wrong. Though i swear alot - lol. how do i adress this...should i just leave it be and not talk to her about my situation anymroe? Like i said we have been friends forever and it is one of those situations that if we met today we woudl nto be friends. I think she is just dumb and ignorant.  :banghead;
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« Reply #1 on: January 13, 2008, 04:31:01 PM »

hi everyone. Just posted a question on the work site if you have a chance please look at it. Question though.- need help repsonding to this situation. Was out with a friend the other day (some might say she really isn't a friend but we have been for about 20 years). Anyhow we were driving along and i was telling her about the resourecs online about ESRD and how i plan on getting involved with tranplants and such. Well i said to her "i'm assumign that you don't want to donate right?" she yelled at me and said "they are mine you mothereffer!" i said i'm sorry but why wouldnt' you want to help someone live, its not agaisnt any religion and you can still have the funneral you want. she yelled again at me and repeasted what she had said. When i talked to her 3 years ago if she woudl get tested, she said no and we left it at that. Funny she seemed more grown up at that time and now it seems like she had reverted back to a kid. She won't listen to anythign i have to say about organ donation. She knows m y situation and knows that i could die without a transplant but doesnt' believe that it is her duty to do anythign for anyone else. I'm not asking her to donatem to me, i'm just asking her in general. She also claims that she is very catholic - which i don't think she is cuase i believe that even if you dont swear but are thinking it it is wrong. Though i swear alot - lol. how do i a'ress this...should i just leave it be and not talk to her about my situation anymroe? Like i said we have been friends forever and it is one of those situations that if we met today we woudl nto be friends. I think she is just dumb and ignorant.  :banghead;

First of all you will not die if you don't get a transplant, you can live many years on dialysis.  On the news and such they always say so and so will die if they dont get a kidney transplant I want to scream at the TV that there is dialysis and you can live on it.  I know it's not the best but we're all living proof it can be done.
She doesn't seem to be receptive to the idea of transplants so I'd not really bring it up again for a while, if she asks questions fine but don't be pushy.  I don't know what else to say.

Donna
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KT0930
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« Reply #2 on: January 13, 2008, 05:08:03 PM »

I also would simply not bring it up to her anymore. I was talking to a neighbor a couple of months ago about my situation (not even hinting that she donate because I don't know her that well), and about organ donation in general. All she wanted to talk about was when was I going to run for office on the Homeowners Association, and if I would walk with her and her husband in the mornings, I would feel so much better and have so much more energy.  :banghead;  :banghead; There are just some people who will not listen to what you have to say, so it's better to just not waste your breath with them.
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« Reply #3 on: January 13, 2008, 07:47:49 PM »

Some people just don't get the transplant issues. I would not speak toher about it again. She obviously said a resounding NO and meant it.
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« Reply #4 on: January 13, 2008, 07:50:56 PM »

OMG, I find it so hard to believe how some people could be so ignorant, if she doesnt want to then fine, so be it,  she could've done without the cursing though.  Sorry you had to sit there and listen to her, i truly hope you re-evaluate your friendship with her, i believe a true friend would've at least listened to what you had to say and made an intelligent conversation out of it.  Good luck with everything Claudia, keep us posted ok.  :cuddle;
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« Reply #5 on: January 13, 2008, 07:56:07 PM »

Karma is a bitch....Thats all I got to say about that...Dont worry about it...Obviously some people just dont take the time to read up on things and are ingnorant and misinformed...
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« Reply #6 on: January 13, 2008, 08:14:04 PM »

you can't reason with a child. skip the topic altogether with her.
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« Reply #7 on: January 13, 2008, 08:18:35 PM »

I just have to understand that my friends are not in my position and they have different opinions on this subject.  I know people that would not donate their or their loved ones organs. 
I don't think they know about eternity and how we will have spiritual bodies.  I don't know, I guess I just feel sorry for them.  They will not understand until they or someone like their child needs an organ.
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« Reply #8 on: January 13, 2008, 09:34:45 PM »

I'd drop it completely - it's not worth the hassle.  It might also be time to reevaluate the value of her friendship.  Some people you just outgrow.
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« Reply #9 on: January 13, 2008, 11:17:37 PM »

I wouldn't bring the subject up again and I'd manage to be 'busy' and not see too much of her.  There is no excuse for speaking to you like that, sounds as if you hit a raw nerve there for some unknown reason.  I once had a work colleague who wouldn't carry a donor card because she believed that if she was on life support and someone 'important' (like the Queen) needed her organs then the Drs would let her die.  I couldn't convince her that it isn't like that.  We have a saying in the UK "There's nowt as queer as folk" and my colleague & your friend prove it!

Talking of donation, our PM is mooting the idea of an opt out system.  Sounds a good idea to me but a bit radical for good old UK.  Let's see what happens, could be interesting  :)
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RichardMEL
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« Reply #10 on: January 14, 2008, 12:37:26 AM »

She sounds rather selfish and thoughtless really. Again as others have said I wouldn't bring itup - even about donation in general. I wonder if her tune would change if a family member was, unfortunately, in the situation which required some kind of donation and it "hit home" on a personal level. You might have known this "friend" for a long time, but friends like that I reckon you can do without. The least she could have said was "I understand your personal situation but you're right, I'm not interested in donating" which is harsh, but at least is polite!!

Some people, when confronted with something like that can get scared.. specially if they feel you're pushing them to donate (I know YOU weren't.. but who knows what her perception was)...

Anyway yeah.. just drop it... and maybe consider how much of a friend she is and what positives she adds to your life....
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« Reply #11 on: January 14, 2008, 07:10:51 AM »

OMG, I find it so hard to believe how some people could be so ignorant, if she doesnt want to then fine, so be it,  she could've done without the cursing though.  Sorry you had to sit there and listen to her, i truly hope you re-evaluate your friendship with her, i believe a true friend would've at least listened to what you had to say and made an intelligent conversation out of it. 
I agree with goofynina and pretty much everyone else who has posted on this. Your "friend" is telling you loud and clear that she doesn't want to talk about it, albeit in a very rude and unfeeling manner.  I don't have kidney disease, but the fact is that we all have a limited time on this earth; do you really want to spend any of yours hanging out with this person?  Personally, my answer would be "No," and I would do my best to let this friendship die.  On the other hand, if that poses too many difficulties AND if you can preserve what's left of the relationship by simply not talking about this particular subject, then that might be the way to go.  Good luck; you have my sympathy.
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« Reply #12 on: January 14, 2008, 07:49:55 AM »

Its at times like this you find out who your true friends are !! I 'had' a friend of over 30 yrs who dropped me like a hot potato when i started dialysis , let alone ever considered the transplant issue. All i can say is one day these so called friends are going to need something and who will they come running too? (what goes around, comes around!)
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« Reply #13 on: January 14, 2008, 12:45:04 PM »

I would not approach the topic with her again.  She seems to be very uneducated about organ donation and stuff.  A "true " friend would not have reacted that way.  Like someone said you can live a long and normal life on dialysis.  Hubby has been on dialysis for 10 1/2 years now.  He is doing fantastic.  He won't even put his name on the list for a kidney.  We have to go out of the province for transplants so that might be one of the reasons why he doesn't want to put his name on the list. he is doing so well too that sometimes its better to leave things as they are.  He really does not mind dialysis anyway.  He is very rarely sick.  I get colds and stuff a lot more than he does!!!
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« Reply #14 on: January 14, 2008, 01:02:12 PM »

Well i said to her "i'm assumign that you don't want to donate right?" she yelled at me and said "they are mine you mothereffer!" i said i'm sorry but why wouldnt' you want to help someone live, its not agaisnt any religion and you can still have the funneral you want. she yelled again at me and repeasted what she had said. When i talked to her 3 years ago if she woudl get tested, she said no and we left it at that. 

Maybe she feels that you are using your friendship to pressure her for an organ.  Some people are very sensitive about the subject.  If you watched the CNN series on organ donation and transplant last year (name escapes me) you would be scared out of your gourd when it comes to living donation.  It does appear that she feels some pressure here.  When pitching organ donation I would avoid the topic of funerals because that is going to turn anyone off faster than immediately.  I wouldn't ever mention it again to her.  She knows your situation and if she wants to come forward she will.  Organ donation and major surgery are huge commitments to make and some people are understandably very uncomfortable with surgeries, especially those that can be avoided.  It is a touchy subject, asking or hoping that someone will assume a signifcant  risk to themselves in order to help us.  Don't be too hurt by what happened.  You can still be friends but the renal issues should be moved out of the foreground.
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« Reply #15 on: January 14, 2008, 01:04:07 PM »

There is a sense in which it is true to say that patients who do not get a transplant will indeed die, since they suffer such a greatly reduced life expectancy without a transplant that their time of death will, in all probability, be significantly accelerated from what it would have been with a transplant.  If you call the loss of the years which could have been lived with a transplant a kind of premature 'death,' then yes, patients can and do die without a transplant.  For diabetics, for example, life expectancy triples with a transplant, so if a diabetic, instead of getting a transplant, stays on dialysis until he uses up one third of what could have been that extra time gained from a transplant and then dies, then you could say "he died because he did not get a transplant."

Also, patients on dialysis run the risk of many forms of death which do not exist as risks for those with a transplant.  Catastrophic hypotension during dialysis, lethal septicemia from an infected access, death from cardiac stress due to the alternating excess and deficiency of blood volume as fluids build up and are quickly withdrawn all at once, etc., are all factors which, if they occur, can be said "to cause a patient to die because he did not have a transplant."

In the specific situation posted, perhaps the 'friend' thinks she is being indirectly pressured into making a living donation rather than just signing a donor card for posthumous donation.  Healthy people indulge themselves in the luxury of over-rating the dangers of ANY medical intervention in their lives, and even though their chance of dying in an operation to donate a kidney is one in 3000, in their pampered existence they find that risk intolerable.

As for posthumous donation, many people are fooled by the impressive work that mortuary science can do in making a corpse look life-like for a few days to think that they will continue intact and presentable forever in the grave afterwards.  This leads them to shun donation after death, because they fear their bodies will be scarred.  But in fact, as any pathologist can testify, even the best preserved bodies are just dust and bones after about a year in the grave, so there is no lasting trace of whether any organs were removed.
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« Reply #16 on: January 14, 2008, 01:24:10 PM »

I wouldn't ask anyone directly, you don't know if they match, most people don't even know their own blood type, and making that request is putting a lot of pressure on the person asked. How do they say "no" without damaging the relationship?
I think all you can do is say, "I need a kidney transplant. I need a living donor. The wait list for deceased donors is __ years long and many people die before getting a transplant. I hope anyone considering becoming a donor will contact my transplant coordinator. I have more info for anyone who is interested."
You can send emails, tell everyone, notify your church, alumni group, neighbors, and friends and family.
The people we thought would step forward didn't, and the ones that did were a complete surprise.
You never know what to expect. Miracles do happen.

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Jenna is our daughter, bad bladder damaged her kidneys.
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Claudia30
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« Reply #17 on: January 14, 2008, 02:45:14 PM »

Thank you all for your advice. I greatly appreciate it. I don't think my friend is all that educated on organ transplants and I know i can't force her to see the light. Friendships do outgrow but it is hard when you don't have many friends. I think I'll stick to not talking to her about it...i try to not talk to her about donation, but i slipped this time and mentioned it. Thanks again for your advice everyone.
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« Reply #18 on: January 14, 2008, 04:02:59 PM »

Claudia,
Instead of donating a kidney, your friend could be an advocate by helping you reach out to others. Jenna didn't have any friends either, she was really sick throughout high school and didn't develop many relationships. It's helpful to have a friend or family member do some of this for you, if possible. So when you talk to your friend again, tell her you DO NOT WANT HER KIDNEY, but you need some support.
Good luck.  :cuddle;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
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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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« Reply #19 on: January 14, 2008, 08:21:49 PM »

Its at times like this you find out who your true friends are !! I 'had' a friend of over 30 yrs who dropped me like a hot potato when i started dialysis , let alone ever considered the transplant issue. All i can say is one day these so called friends are going to need something and who will they come running too? (what goes around, comes around!)

You will probably do what I do...jump up and volunteer to help them anyway!
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lifenotonthelist.com

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
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« Reply #20 on: January 16, 2008, 01:04:55 AM »

Thank you all for your advice. I greatly appreciate it. I don't think my friend is all that educated on organ transplants and I know i can't force her to see the light. Friendships do outgrow but it is hard when you don't have many friends. I think I'll stick to not talking to her about it...i try to not talk to her about donation, but i slipped this time and mentioned it. Thanks again for your advice everyone.

Well you have hundreds of friends here!! We may be virtual but we may just understand a lot of what you are going through far better than those you have known in person for 20 years.

Interestingly here when I went to a seminar about transplantation before I started dialysis they emphasised strongly to NOT ask anyone or discuss it with them re donating an organ since people should NOT feel pressured into anything (which I would not want to do anyway). Of course this was mostly in relation to close family members who would be likely live donors anyway, but I guess the same thing applies.

When people talk to me about it and it comes up I just say something like yes I need a transplant and am waiting for that call. There are so few organ donations around lots of people in my situation are waiting - please if you aren't registered to donate your organs please consider it - not for me per se - but for someone like me who you may be able to help sometime in the future.
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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 #21 on: January 16, 2008, 02:50:57 PM »

When this subject comes up I have noticed many people have irrational fears regarding transplants because there is so little education to the public. People think they will be left with ugly scars, decreased life expectancy, death (should somebody "jump the gun" and take their organs), decreased kidney function in the remaining kidney, etc. They may also think you had something to do with your own illness and are undeserving. Most of the time, these same people don't even want to hear other points of views on the subject as they have already made up their mind. I don't even bother to discuss the issue with these kinds of people anymore. But I am learning who my true friends are in this world.
       With friends like that, who needs enemies?
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« Reply #22 on: January 16, 2008, 03:06:42 PM »

I have a friend who's father died in January of 2005, I think.  They donated everything they could from his body.  It was a beautiful thing. However, she has not offered to even be tested for me - not once.
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Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
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« Reply #23 on: January 16, 2008, 09:54:53 PM »

Maybe she doesnt realize she can donate while still being alive.  Has the subject ever came up with this friend?  How do we make these people understand that donating is such a great gift (if they are able to)  There are so many "healthy" kidneys walking around that it drives me insane.  :urcrazy;
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« Reply #24 on: January 17, 2008, 08:04:24 AM »

I love your new photo, Goofy!

Yeah, I'm pretty sure she knows.  She's a teacher.  I personally think teachers should know these things...  lol.  Seriously, she's a very bright individual.  I'm going to let my family do their testing, and my husband of course.  I think it would be absolutely horrible to have to say to someone "Well, you never ASKED me to be tested."
This is a hard thing to ASK for. 

My brother goes for his blood draw/test tomorrow a.m.   Fingers crossed....
« Last Edit: October 13, 2008, 04:40:37 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
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