Relatives and Transplants.

[MattyBoy100]

I`m going to be put forward for tests to see if I can be put on the transplant LOTTERY(!).  I`v been given a DVD and some literature which I tactfully left lying around the house for my Dad to pick up and read/watch.  He hasn`t done either yet and doesn`t even seem to wish to discuss it. He is 62 and maybe not suitable as a possible donor but even if he said to me he was scared of having the op if he was suitable I would understand his point of view.  But the longer his silence continues, the more I feel he doesn`t care and thinks "thank God it isn`t me.".  Now I know I may sound resentful but surely if he did care he would at least talk to me about his feelings on the issue.  As his silence continues I`m beginning to resent him for not caring.  I`ve read on some threads that some of you have relatives who would offer without having to think about it.  I know this is a contentious issue and I feel it should be brought out into the open.  I`m not allowed to ask relatives to consider being a donor according to my transplant speacialist.





EDITED:  Moved Topic to Proper Section - Goofynina/Moderator

[Epoman]

I`m going to be put forward for tests to see if I can be put on the transplant LOTTERY(!).  I`v been given a DVD and some literature which I tactfully left lying around the house for my Dad to pick up and read/watch.  He hasn`t done either yet and doesn`t even seem to wish to discuss it. He is 62 and maybe not suitable as a possible donor but even if he said to me he was scared of having the op if he was suitable I would understand his point of view.  But the longer his silence continues, the more I feel he doesn`t care and thinks "thank God it isn`t me.".  Now I know I may sound resentful but surely if he did care he would at least talk to me about his feelings on the issue.  As his silence continues I`m beginning to resent him for not caring.  I`ve read on some threads that some of you have relatives who would offer without having to think about it.  I know this is a contentious issue and I feel it should be brought out into the open.  I`m not allowed to ask relatives to consider being a donor according to my transplant speacialist.

[/size]

WHAT THE p*ck? 

[MattyBoy100]

Epoman, I thought you didn`t tolerate the use of language on your site!?

But yes, it`s true, that is what my specialist said to me.  I have to wait for a relative to make the offer cos I can`t be seen to be putting any undue pressure on anyone or upsetting anyone by putting them in an awkward situation!

[Hawkeye]

Epoman, I thought you didn't tolerate the use of language on your site!?

Three reasons what Epoman said were ok.

• It's his site he can do what ever he wants
• It's ok in moderation when not directed at someone
• Sometimes that is the best way to express what needs to be said

[goofynina]

Mattyboy,  I am sorry but i must agree with Epoman "What the F*ck"   (he doesnt mind a cuss word now and then, just as long as it isnt directed towards any other member) but,  your family members should've stepped up as soon as they found out you were ill.  I have never heard of anyone NOT being able to ask someone to donate their kidney, that is just plain stupid, what are they going to do, not allow you to have the surgery,  but on the other hand, like i said, you shouldnt have to ask, they should be lining up to take them tests for you.  Maybe they dont realize they can, maybe they just need a little more education on your disease, i would definetly talk to them and try to explain just exactly where you stand. Dont give up, k,

[Rerun]

Matt.  Why put your family under the knife?  You are a big boy (meaning you are not 15) you can wait on the list.  If someone approaches you and offers, that is different.  Don't expect them to just do it.  Besides, the success rate of living related donors and cadaverous donors are both above 80%.

You can ask, but I wouldn't risk your feelings getting smashed.

I understand your feelings though.  Don't you wish they would just "offer" so you could say "Nah, I will just wait."  The silence leaves too much to be imagined.  None of my family have offered either and I've been dealing with this for a long time.  So, I just make it known I don't want a living donor.  I've had friends offer, but not family.  Yes, it kind of hurts if you think about it too much.

[Epoman]

Epoman, I thought you didn't tolerate the use of language on your site!?

Three reasons what Epoman said were ok.

• It's his site he can do what ever he wants
• It's ok in moderation when not directed at someone
• Sometimes that is the best way to express what needs to be said

Exactly a curse word now and then is fine as long as it is not directed at another member. And yes sometimes a "smiley" by itself just won't do. 

By the way this is in the WRONG section, mods?

[Sara]

I can imagine how much that must hurt.  They might be scared, or not realize (even though you'd think that would be obvious) they could possibly help you.  My suggestion is to print up a short letter that you could mail to every member of your family.  Explain what you've been going through, explain what the options are, and mention if they think donation might be something they are even remotely interested in to please contact you (no pressure).  You could even list some FAQ's about kidney donation to answer some of their immediate questions.  That way you've laid it out, the ball is in their court.

[Zach]

I think relatives can be scared and therefore embarrassed to talk about it.
It's a tough call.

[livecam]

The issue of living donors is really full of contradictions.  The transplant community is absolutely adamant about being sure that a donated organ is donated out of altruistic motives on the part of the donor.  They want to be absolutely certain that there is no coercion either psychological or financial being applied on the part of the patient who needs the organ.  So really you can be praying to god 24/7 that someone will come forward but you aren't supposed to go asking anyone.  On the other hand I can remember meeting with one of the best known kidney transplant surgeons in the world for my transplant evaluation and getting almost the hard sell pitch to my wife about becoming a living donor.  The center involved was looking to do the first 4 way kidney swap at the time and  he came on strong to her for that.  Just to elaborate a bit more I had a couple of living donors who both offered and were tested.  I don't know completely for sure but I believe both of them came back as good matches and were cleared health-wise.  Both of these people worked in our newsroom, one was a married male and the other a single female.  The guy was put off by family concerns, he had a number of children, and there were objections from his wife.  The female was essentially ready to go and had inquired about time off from the company in order to do this.  In her case I believe interference within the company made her go negative on the idea.  She is a bit of a star reporter in our company and I had made the mistake of mentioning that this was in the works to a hostile human resources manager.  Well after that discussion communications between prospective donor and recipient pretty much ceased.  But that is all another story and a painful one as well.  Maybe more later on that.

[Black]

... But the longer his silence continues, the more I feel he doesn`t care and thinks "thank God it isn`t me.".  ...  As his silence continues I`m beginning to resent him for not caring.  ... .

I wrote the following and then read it, and then decided that perhaps I should preface it with the the following.  There is no way I, or anyone else, can know exactly how you feel.  Especially since I am not dealing with kidney failure, dialysis, or transplant issues -- but my husband is, and I see daily how it affects his life, and his family.  I also watched as my younger brother died years ago from renal cell carcinoma and how it affected my parents, his children, and the rest of our family.  His death gave us all a different perspective on what is important, especially in dealing with family dynamics.  This isn't a play or a dress rehearsal; this is real life; it's never easy; it's never fair, and it doesn't follow a writers neat plot line.  All that being said, here is what I wrote in reply to your post:

Please do not interpret his silence as not caring.  Silence is just silence.  At his age, being from a different generation, it may just be that he has a very difficult time discussing feelings, and his feelings may be so mixed that even he doesn't know how he really feels.

Maybe you can try telling him about general transplant information, and then ask him, "If you were in my situation, what would you do?" or "...how would you feel?" or  "... what would you want?", or something along that line, and see what responses you get.  But, remember, it may be too painful for him to contemplate being in your shoes because he just can't handle realizing how difficult it is for YOU to be in your shoes.  Most parents have great difficulty accepting that they are not in a position to rescue their children and protect them from all that life entails.  The worst case? You find you were right, but chances are he is just unable to communicate his feelings.

I believe Oscar Wilde was right -- "Children begin by loving their parents; as they grow older they judge them; sometimes they forgive them. " -- which means, sometimes they don't.  I believe all of us have to deal with the acceptance of our parents being imperfect humans; often as a prelude to realizing that we, and everyone else, are in the same category.  I believe it really is not important that we come close to perfection, but it is important that we try.  In the end, however convoluted our journey, in order to have peace of mind, we must come to the point where we accept our shortcomings and failures as part of being human, and I believe, grant the same latitude to others, especially family.

If my thoughts have offended you, or are out of line and beyond what you wanted to discuss, I apologize in advance.

[MelissaJean]

I agree with Black that maybe your father is just going through a lot of pain and would rather not discuss the situation.  I saw the pain both my parents went through when I was really sick, my dad closed up a lot! 
As for bringing up the subject of transplantation, I wrote a mass email.  My friends said that was a good idea because they weren't sure how to approach me about asking. I guess for outsiders it is an awkward situation.
Hope this helps and GOOD LUCK!

[Panda_9]

Just because he hasn't offered shouldn't mean he doesn't care. The silence isn't a good thing though, we need support! My other half is very silent about my illness and everything that relates too it, although I do know he cares, he is just shit scared. I would never expect someone to offer me a kidney, but mum has offered me one, and insists on it, so have alot of people. I would rather she not go through with it, as its not exactly a little operation. However, I am going to go through with it because I know my family want to see me get off dialysis and get a life, as do I. I cant go on the list either, so its either that, or dialysis and no life, no work, no buying a house etc.

If you are only new to this whole shithouse world, then perhaps your dad is still dealing with it and may not know how to talk about it. If you can, perhaps just gently try to talk to him and see if you can get anything out of him. I know I have to push my other half to get anything out of him, its just the way his family are.

[coravh]

My transplant center didn't expressly tell me not to ask but they did give me a flyer about approaching people. They suggested that the best way to do it was have a neutral 3rd party broach the subject. Make sure the approacher knows about donation and the risks. The approachee can then be free to give an honest answer without having to tell you to your face "no way". This way too a decent lie can be concocted to save face for everyone. This way it is kept at armslength and everyone is under less pressure.

I just wanted to add that I know a huge number of people who's families refused to donate. I don't know what that's all about but in today's society, many family members are just not that generous.

Best of luck to you.

Cora

[Epoman]

My transplant center didn't expressly tell me not to ask but they did give me a flyer about approaching people. They suggested that the best way to do it was have a neutral 3rd party broach the subject. Make sure the approacher knows about donation and the risks. The approachee can then be free to give an honest answer without having to tell you to your face "no way". This way too a decent lie can be concocted to save face for everyone. This way it is kept at armslength and everyone is under less pressure.

I just wanted to add that I know a huge number of people who's families refused to donate. I don't know what that's all about but in today's society, many family members are just not that generous.

Best of luck to you.

Cora

GOD I hate politically correct bullshit. Just ask them to their face and if they say no, then so be it. We have so much to deal with emotionally and we have to now worry about their feelings? Screw that.

[angieskidney]

But yes, it`s true, that is what my specialist said to me.  I have to wait for a relative to make the offer cos I can`t be seen to be putting any undue pressure on anyone or upsetting anyone by putting them in an awkward situation!

I just read this now ... and I have to say ... you can't say you were told NOT to ask. The reason behind you being told what you were is because it is unfair to guilt anyone into giving you a kidney.

My own brother feels exactly like your father and because of that has never gotten tested even though he might be a perfect match!

It isn't their fault the life we must live. They do care .. but they are also scared to death of going through what they see us go through! They also think we are amazingly courageous!

I believe Oscar Wilde was right -- "Children begin by loving their parents; as they grow older they judge them; sometimes they forgive them. " -- which means, sometimes they don't. I believe all of us have to deal with the acceptance of our parents being imperfect humans; often as a prelude to realizing that we, and everyone else, are in the same category. I believe it really is not important that we come close to perfection, but it is important that we try. In the end, however convoluted our journey, in order to have peace of mind, we must come to the point where we accept our shortcomings and failures as part of being human, and I believe, grant the same latitude to others, especially family.

Perfectly said!

I believe they might have only told him that because they worry he is pressuring his father. You kinda get the impression from which people you can ask and who not to ask. If they don't want to talk about it .. that to me is a clear cut sign that they would not be right to ask.  Ask someone else. If there is no one else .. just wait on the list .. as the rest of us who are waiting are.

[sandman]

Well, being that I am sitting on the other side of the fence as it were, that I would rather make an informed decision based off the facts and not just media hype.  But not to put to fine a point on it mattyboy, I think that your father maybe scared shitless because he has seen what you have gone through already and doesn't understand.  A few people here have made an interesting suggestion to hand write or type out an informative letter about what's going on in your life.  Maybe this might be to difficult to do but maybe you can site down with him one night and just talk with him.  Not about him donating  his kidney but work your way into it.

[coravh]

 

GOD I hate politically correct bullshit. Just ask them to their face and if they say no, then so be it. We have so much to deal with emotionally and we have to now worry about their feelings? Screw that.

I too hate politically correct bullshit and am not too impressed to have the finger pointed at me. What I said had nothing to do with politically correct and everything to do with human nature. For many people it is very difficult to ask. And for those approached it is a scary proposition and many panic, then saying things that can hurt the person asking very severely. I'm not going to go into details about some of my friends, but I can tell you that had the third party approach been used, my friends would not feel quite so rejected and unloved by their families. Things were said in the moment to my friends that can never be taken back.

I'm not saying it's necessarily the right approach for everyone, but it can save a lot of heartache.

Cora

[angieskidney]

I think it is a good post that is useful to those who don't feel comfortable with the direct approach. Not everyone is the same!

But I think for me it is best to do the straight forward approach as I am 100% fine if they are against donating to me. I have no hard feelings and complete respect for their feelings and decision.

[Epoman]

 

GOD I hate politically correct bullshit. Just ask them to their face and if they say no, then so be it. We have so much to deal with emotionally and we have to now worry about their feelings? Screw that.

I too hate politically correct bullshit and am not too impressed to have the finger pointed at me. What I said had nothing to do with politically correct and everything to do with human nature. For many people it is very difficult to ask. And for those approached it is a scary proposition and many panic, then saying things that can hurt the person asking very severely. I'm not going to go into details about some of my friends, but I can tell you that had the third party approach been used, my friends would not feel quite so rejected and unloved by their families. Things were said in the moment to my friends that can never be taken back.

I'm not saying it's necessarily the right approach for everyone, but it can save a lot of heartache.

Cora

I wasn't pointing nothing at you I was making a blanket statement.  I was just speaking my mind at stating my opinion on the matter. How hard is it to understand:

"Hey frank I need a kidney transplant would you consider donating to me one of your kidneys?"

"Uh, well it's kind of scary, I'm not sure. What does it envolve?"

"Well let me tell you everything about the process"

20 minutes pass

"Well frank that's the process, so what do you think"

"Well I don't think I ready to do something like that, it's a big step"

"Yes it is and I understand if you are hesitant, think about it and let me know if you change you mind"

Just ask, but the patient needs to understand what a big life event this is and not hold any grudges toward a scared relative. Bottomline a patient shouldn't ask if he can't handle rejection. I think it's dumb to use a proxy to bring up the subject.

Again to "Cora" I was just making a general statement nothing personal to you. Try to remember on this site I encourage members to speak their mind.

[coravh]

Hey Epoman.

Wouldn't it be great if everyone could have a normal conversation? It doesn't always work that way in real life. Some examples:

"Hey Dad, would you consider giving me a kidney?"
"No. My new wife doesn't want me to do it and since we have a child now, he might need it."

"Hey Mom......"
"I don't want the scars. I just had my tummy tuck. And don't ask your sister. She shouldn't be put at risk just because you  have a problem".

"Hey Sis......"
"God gave you this trial and it is up to you to make the best of it and pass His test. It's not my test and I shouldn't interfere."

"Hey Bro...."
"I know I said I would a few years back but I was young and it was the heat of the moment. I have my new car payments and don't want to take the time off work."

"Hey Mom...."
"It's all your fault that you are in this position. Don't expect me to bail you out. You've had since you  were 5 to take care of your diabetes and you didn't do a good enough job. That's not my fault or my problem."

I am so blessed that I have a very small, but extraordinary family that stood by me and wanted to help. My half cousin (father's half sister's daughter) gave me a kidney and my mother's cousin's son in Germany was ready to get tested if things didn't work out. Both of these cousins had only met me about a half a dozen times.

The really sad part is that these stories are true. I was even there for 2 of them. It's because of selfish and thoughtless people like these that the third party approach can help. I couldn't deal with a close family member basically saying they didn't love me enough to help.

Cora

[vandie]

Along this same vein with the relatives and transplants. . . . . .
How do you feel about asking your children to donate?  I have an 18-year-old, who I won't consider, not yet anyway.   It's not something I'm comfortable with.  Love to hear others take on it.
 

[Ohio Buckeye]

I have 2 sons and 1 sister left and I would not put them at risk as diabetes runs strong thru the
family line.  I would not want to take a chance.  If I took a kidney from someone and they
later needed it or had kidney problelms I would find that hard to live with.  My son has a
new baby to raise.  My other son is 25.  Lots can happen over a lifetime.  I can't take that
kind of a chance. 

[vandie]

I agree completely.  I have had people actually tell me I was being selfish not asking my daughter to test.  Almost comical the way people overstep sometimes.

[Epoman]

Hey Epoman.

Wouldn't it be great if everyone could have a normal conversation? It doesn't always work that way in real life. Some examples:

"Hey Dad, would you consider giving me a kidney?"
"No. My new wife doesn't want me to do it and since we have a child now, he might need it."

"Hey Mom......"
"I don't want the scars. I just had my tummy tuck. And don't ask your sister. She shouldn't be put at risk just because you  have a problem".

"Hey Sis......"
"God gave you this trial and it is up to you to make the best of it and pass His test. It's not my test and I shouldn't interfere."

"Hey Bro...."
"I know I said I would a few years back but I was young and it was the heat of the moment. I have my new car payments and don't want to take the time off work."

"Hey Mom...."
"It's all your fault that you are in this position. Don't expect me to bail you out. You've had since you  were 5 to take care of your diabetes and you didn't do a good enough job. That's not my fault or my problem."

I am so blessed that I have a very small, but extraordinary family that stood by me and wanted to help. My half cousin (father's half sister's daughter) gave me a kidney and my mother's cousin's son in Germany was ready to get tested if things didn't work out. Both of these cousins had only met me about a half a dozen times.

The really sad part is that these stories are true. I was even there for 2 of them. It's because of selfish and thoughtless people like these that the third party approach can help. I couldn't deal with a close family member basically saying they didn't love me enough to help.

Cora

Hey that sounds like my family  But I understand where you're coming from I have a healthy 23 year old brother who whenever I mention transplants he gets real quiet and has this shit look on his face. Try this one on for size MY own mother told him to never give me a kidney because "he got what he deserved"  Nice huh? So and my family is really small I have no idea where cousins or other relatives are. But I still love my brother, I understand he is just scared and I leave it at that.

Honestly if I have to use a THIRD party because I do not feel comfortable enough to ask a relative then I shouldn't be asking that relative in the first place. I mean I am not just borrowing their car, it is for life. You do realize the what's involved for the donor right? Major surgery, time off from work, physical and emotional healing, and there are risks with ANY surgery and possible other complications, like higher risk for high blood pressure in the future.

That's SAD you said "I couldn't deal with a close family member basically saying they didn't love me enough to help." WHY? because they don't give you a kidney they don't love you? that's ludicrous! Everyone has different fears and levels of fears. You need to be a little stronger and not so dependant on caring how others feel about you.

Granted the conversations you quoted were sad and in some case just plain mean, BUT this is real life baby and life IS MEAN and that's a FACT! Just get used to it. As I mentioned my own mother told my brother to NEVER give me a kidney and she drilled it into his head since he was 12. But if you are wondering why she said it? I have no idea? I never did drugs, never did alcohol, never smoked, so I have no idea why she would say I got what I deserved. Oh that's right because she is a crazy bitch. This is the same woman (now read very carefully) who feels that my son is not her grandson because I am not her daughter. That is the kind of mother I have to deal with. Did I mention she did not come to my WEDDING because... here let me quote her.."I'm not going to your wedding because you are marrying that white-bitch" Now understand my wife never gave my mom any reason to dislike her, my mom is Mexican and does not like white people, but get ready for this.....My dad is white. But that's for another thread, back on topic.

NOW to answer the other posters question, NO I would never, ever, not in a million years take a kidney from my child, I don't care if I was on my death bed and on life support and this would save me, granted my son is only 9 right now but even when he is 29 I would never, EVER take a kidney from my son. NOPE!

Here try this on for size. My wife and I are the same blood type, but I will not even let her go get tested. NOPE! She begs me to take a kidney, but I tell her save it in case our son needs it, since our son is a only child we have no idea what his future holds.

- Epoman