how do you answer this????

[Brightsky69]

Hello everyone 

There is one question I keep getting that I kind of bothers me. I have boyfriend of 6+ years. Granted he is far from perfect but he has his good side. He does get rid of my drain bag and stuff every morning...so I don't have to lift it. And he reminds me to take my binders at each meal....most of the time.
Anyway...getting back to the question.
People will ask me "Why doesn't your boyfriend get tested??? Doesn't he love you enough to do that??"  How the heck am I supposed to answer that?? Most people tell me..."If it were my wife/husband, I wouldn't think twice about getting tested." 
I always say.."well...it takes a special person to be a donor."  Then I think to myself...I guess my BF isn't one of those special people.  Then I start to think...heck, why doesn't he even WANT to get tested??
As a girl growing up I always thought I would be in love with someone who loved me so much they would be like my knight in shinning armor....willing to save my life in need be.
I guess that was just a silly dream.

[willowtreewren]

Brightsky, You have been with this wonderful guy for 6 years. And he cares for you as he shows you in the things he does for you. He is already a special person. But offering a kidney is huge. Not every one can do it. Even though I'm trying to bring my functioning up enough to try again, I still have nagging doubts about whether I will actually go through with it. Surgery scares the heck out of me. I have had so many surgeries since I was a little girl. There could be all sorts of things holding your guy back.

If it really, really bothers you that he hasn't offered to be tested, maybe you should sit down with him and just have a heart to heart. Not that you are trying to pressure him into it, but you are curious since people ask and you don't know how to answer.

Whatever happens, I wish you the best.

Aleta

[dwcrawford]

I know the powers will jump down my throat for this.  I thought sure I'd learned to stay out of situation like this, but I don't think you really need an answer to why he won't... (reread what aleta said) and if you do need that answer maybe you need to ask yourself why is he my boyfriend?   Is it for a kidney?

Stone me now people.

[Wenchie58]

I think my answer to that question would be a simple one.  "I don't know...you would have to ask him."

There are many forms of love.  If you enjoy what you have with him, then enjoy it.

[kellyt]

He's the only one who can answer that, so you should direct them to him.  Don't fault him.  My best friend (at the time) never offered, never inquired as to the status of my donors that were testing, nothing!   The last time I talked to her was when she visited me in the hospital after transplant (Nov) and then briefly in Feb. when she stopped by to pick some papers up for her husband (maybe 15 min. visit).  I'm not upset with her specifically because she didn't "offer", I'm upset because she basically didn't give a crap about my situation at all.  Your boyfriend seems to be involved and obviously has his reasons.  Maybe you should ask him though?  Maybe he doesn't realize he can donate to you?  I found that A LOT of people think you have to be a blood relative to be a "living donor".    We need to educate!     

 

[okarol]

Maybe he's afraid of commitment?

[TiffanyJean]

I think my answer to that question would be a simple one.  "I don't know...you would have to ask him."

There are many forms of love.  If you enjoy what you have with him, then enjoy it.

I think Wenchie is right on the money, so is Aleta. Being a donor - especially a kidney donor - is a big thing, bigger than most people really realize. when your not in the situation then its really easy to say "If it were my wife/husband, I wouldn't think twice about getting tested."  But once your in it - there are lots of things to consider - granted ive offered to be tested to be a donor; maybe not for Richie i'm not the right blood type for him, but i will donate at some point.

We have a friend who is always apologizing to us because he just doesn't feel comfortable donating a kidney (he feels bad because he donates blood at least once a month.) He's O just like riche, and he knows how hard this has been on all of us. it's a very personal decision.

Take care!

TJ

[dwcrawford]

I believe that answers to these philosphical questions usually reside within ourselves. 

[okarol]

I found the hardest part of hoping for a donor was when people would not mention anything about testing or donors or being the slightest bit interested. If some of our family members had said, "I wish I could but I can't" it would be better than saying nothing at all. But to the people who did say that, or did offer, I owe them so much - because they gave me hope that someday, someone would come through.

[funnygarcia]

It could be that he isn't aware of even being a possible donor.
I've found that family and friends really have no clue when it comes to the transplant process.
People assume you need to be related to have that perfect match, they think the surgery is too much to tolerate, they worry about "what if my child needed a kidney later and now I don't have one to give", worried will have to pay medical costs... dozens of reasons and doubts that bar them from offering. 

For me it was a simple choice, he needed one.. I had one.
Does it make me special? Not really.

I did my research to know about the surgery, the testing process, the risks. For people who can't grasp the medical jargon it can be overwhelming.

My MIL told me she would only donate to her kids, never to a spouse or a friend.
But she's kind of odd, she also said that she wouldn't "allow" her adult children to donate to her own son. HUH? I didn't understand that one.



 

[RichardMEL]

Wow some great posts in here already.

To me in just reading what you've said clearly he cares a great deal and isn't scared off by the dialysis/kidney failure stuff. You've been together 6 years. Someone mentioned "commitment" and well I suppose after that length of time people must be wondering if marriage is on the cards or has even been discussed. Kidney donation though is a huge huge thing for anyone to contemplate. I am not sure that his not offering makes him any less of a man or a partner to you... some people just can't conceive of such a situation, while to others it wouldn't be a question. Maybe he thinks a cadaveric transplant will come along soon? Maybe he doesn't think he could be a match (are your blood groups the same?). I definitely agree that if this really IS an issue for you that you simply sit down with him and ask. Of course this is a very difficult thing to do. I know in all the transplant discussions we've had down here they have always suggested to NOT "ask" because that act in itself is a form of pressure on them and they may feel like they should say yes (even if they are not comfortable with it) rather than it being suggested that they don't love you or something if they're not willing to donate. I have 3 nephews who in theory could be some sort of matches. 1 of them is a freakin doctor, and his father(my uncle) actually does live donor transplants at my hospital (!)... none of them have offered or even said a word though the thought MUST have occured to them. Am I bitter or pissed off? No, not really... it is a choice we all make (and we have never really been that close -sadly)

I also think you need to consider what is paramount for you in importance - the relationship or the kidney? I think I'd rather have a great relationship than worry about if they wanted to donate to me or not. It does seem strange that it hasn't come up or he hasn't aparently said anything about it during the time - you'd think your need for a kidney and all that would have come up multiple times in your relationship.

You need to do what feels right and comfortable for you in terms of your relationship - and that includes asking him about it up front, or not. You seem generally pretty happy with the relationship so maybe this is not something that should come between you two (hopefully).

 

[petey]

We have had 10 people tested to be a living donor for Marvin (if you include me -- and I was his donor in 2000).  Eight of the others have either been close friends or ones from my family.  I have a relatively "small" family -- one sister, one brother, two nephews (ages 20 and 17), and my parents (and my dad threw a fit when they wouldn't test him -- he's 73, very overweight, and diabetic -- hello, Daddy, can you guess why you didn't make it past the telephone interview?  but, what a sweet man he is).  Anyway, Marvin comes from a large family -- five siblings and 37 nieces and nephews (half of them are over 21, and quite a few of them are my age).  I have always wondered why no one from Marvin's side of the family (except one niece -- and she was adopted) has ever offered to be tested.  However, I have never asked them this question, and neither has Marvin.  Marvin says he could never, never, never ask anyone to be tested; he says it's a personal choice, and each person has his/her own reasons for offering or for not offering.  It's their bodies, their kidneys, their convictions, their fears, their reasons, their choices -- according to Marvin.  He has never questioned their not offering; he says he was shocked (but touched beyond words) that the ones who did offer to be tested did so.

As one who was tested as a living donor and eventually became one, I can tell you this: In my soul, I knew it was the right thing for ME to do.  But, we're all different.

If you have a good relationship (and it sounds like you do), would asking your BF why he hasn't offered put a wedge in that relationship?  Do you think that he would feel pressured if you asked?  Does it matter if others outside your relationship understand his reason for not offering?  Is it really, really bothering you?  Not knowing the full scope of your relationship, I can't answer these questions.

[cariad]

It's probably just the bitter old lady in me, but I would ask these people why they think it is any of their business. This to me is such a monumentally rude question it really makes "Why don't you two have children yet?" seem straight out of Miss Manners. I would not even encourage that question with any sort of polite, canned answer. Unless these are extremely close friends, and then I might be willing to get into a "I've wondered that, too" conversation.

The problem I see with telling people to ask your boyfriend is that they just might do it, and I don't think it is fair to him to have to constantly field that question from outsiders. I do think it is ok for you to ask, since you are wondering. It will more than likely be awkward, though. Good luck!

[kellyt]

Good point.   Plus, have these people who are so interested in why your boyfriend hasn't tested offered to test themselves?

 

[RichardMEL]

definitely good points!

[petey]

It's probably just the bitter old lady in me, but I would ask these people why they think it is any of their business. This to me is such a monumentally rude question it really makes "Why don't you two have children yet?" seem straight out of Miss Manners.

Off topic...but this reminded me of Marvin's old aunt and her questions.  We tried for years and years to have children, but it never happened.  Every time I saw Marvin's old auntie, she would say, "So, when are you going to start a family?"  I didn't want to be disrespectful, but I also didn't want to discuss our infertility issues with her.  So, I'd answer, "We are a family, Auntie.  We're a family of two -- just me and Marvin."

But, the next time I saw her, she asked again..."When are you going to start a family?"  It was a sensitive issue for me (as we both desperately wanted children), and I found myself telling her each time that we were a family even without little ones.  Bless her heart; she's dead and gone now.  But, all of my memories of her center around her insensitivity to me and this question.

[effinxmandy]

I really hope I'm not repeating myself here, I haven't read all the posts so bare with me!

First and foremost, a kidney doesn't equal love. You have NO IDEA how many people I've talked to when they've learned I've worked in dialysis and try to educate them on organ donation, that they could never do it. And it always starts out the same "It's not that I don't love them to death..." but there is always that BUT! Fear of surgery, fear of ending up on dialysis if the one good kidney fails, ect. It's a huge thing to ask for (or even offer!)  and donor surgery is far more risky, because the shock to the body of the donor is greater. It takes much longer for them to recover, believe it or not.

Secondly, you say he changes your bag and reminds you take your binders, ect. This is someone who's seen firsthand someone struggling with kidney failure, which brings me back to one of the things I mentioned before: losing their one good kidney and ending up on dialysis. Think about, if probably scares the crap out of him!

I don't think he's being selfish and I don't think him not offering to get tested equals how much he loves you. He wouldn't stick around if he didn't  It's a major surgery with a lot of risks and complications and recovery, and like (most) everyone I've ever talked to about organ donation, most are even uncomfortable of the thought of donating even after they die, let alone alive.

So please don't dwell on this! It's none of their business anyway! Actions speak louder than words, and I truly think if they were in the same situation as you, they wouldn't be so quick to make themselves look like saints.

[fluffy]

my girlfriend has offered, but i know that there are risks. and i would never risk her health in any way. Personally id rather have her love and company than a transplanted kidney.

[Jean]

I think fluffy has the right answer for you. That is how I feel about it too and I have been offered a kidny by at least 5 people. I am just too old. But, If this guy has stuck with you this long, he cant be a bad guy, ( I dont mean that aginst you, I just mean most men these days are so afraid of commitment). But, if it would make you feel better, then I would go ahead and chat with him about it.

[twirl]

I have a twin sister who will not test for me
I have a friend I grew up with, as a sister, and she will not test
I have a husband who wants to test but he has had high blood pressure all his life
I have three friends who want to test
I guess you never know
but I would feel like you do

[RichardMEL]

Reading Mandy's post made me think of something else he (the bf) may feel...  what if he gets sick because of the transplant and can't be as much support to you anymore?

I know when my sister's transplant evaluation finished and she was knocked back I was actually *relieved* - because I knew that deep down no matter how much I understood that it was her decision and desire to donate even knowing the potential risks etc, that I would feel horribly responsible should anything go wrong down the track.. and like most posters here I wouldn't want to do that to someone I loved or put them in a potential situation to have to go through what I am (ie: kidney failure/dialysis) - while it is a remote chance to be sure, there would still be that risk. So, I was happy(in a way) when they said no.

I also agree with the idea that kidney donation does NOT equal LOVE. and lack of it does not mean there is love also. Absolutely.

It's funny but I was up the other night and I saw the Eddie Murphy comedy on TV "Coming to America" - now while it's a fun film the serious point of it is the idea that the Prince wanted to find someone who apprieciated and loved him for who he was and what he gave to her as a person, not that he was a rich prince - and of course he got that in the end.. but it strikes me that this is really what this is about - if you love someone it shouldn't be because of what they can do for you (kidney, money, great sex.. oh wait.. maybe great sex is a different issue  ) but for who they are and how you are with them. If they're rich, or offer a kidney, or whatever... that's kind of like the bonus in a way.

[monrein]

I sort of look at it the other way round.  I was amazed by those who offered to be tested, I found their generosity overwhelming in the extreme and very unexpected.  I completely understand those who are too nervous, etc.  I do agree with Karol however that it is helpful if people are able to just say that they wish they could.  One of my best friends told me that he wanted me to know that he wasn't sure that he'd be able to donate (I don't know any person more queasy about all things medical) but he'd be hiding in a cupboard somewhere and if no one else stepped up then he would.  I appreciated his honesty and I let him know that I completely understood his dilemma.   It was a very real dilemma for him as he is someone who would "do anything" for me and has been an amazing and dependable friend since I was 18.  Not stepping up as a potential donor or even backing out after offering is not, to my way of thinking, a selfish act.  I think it's far more complex than that and reluctance to donate or test can be painful also to the person himself.  Being torn in different directions by fears that pummel the desire to do an amazing thing for someone else can't be easy.  Are there many on this board who, prior to being diagnosed and entering this weird world of ESRD, stepped forward as organ donors of any kind?  Some people are simply incredible and they are living donors.  It's not that those who can't are particularly selfish, they're in fact quite normal I think.   It's that those who do step up are particularly selfless, generous, and able to get past the gore of it all.  They deserve all the recognition and gratitude we have in us but those who can't don't deserve our judgments. 

In my opinion no one owes us their spare kidney, not even those who may love us and I think we have to be careful about the difference between education and pressure.  My husband still talks about donating altruistically to a stranger and I try to discourage him (when he dies all is up for grabs) because of my own selfishness I guess but I don't want to go through any more medical thing in my family and I'd be afraid for both of us, despite all that I know to be factual about low risk.  I shouldn't have to explain and justify these feelings  and they may indeed change over time but for now I don't like the idea. 

I also think I might turn that question right back to the questioner and enquire about their testing status.   

[paul.karen]

Is it possable he has been tested already without you knowing?
Maybe he is a different blood type or maybe he was tested and came up positive for something that prevents him from being a donor.  And he ddint want to get your hopes up.  Just a different viewpoint.

Six years is a nice relationship 

I have been with Karen for 13 years and we are not married.  Marriage is a reason to get divorced IMO.  And there are other reasons people dont get married.  Love has no boundaries.

I am glad you have a partner to be there to help you through the tough times as well as with dialysis.  This is a great thing.

[Des]

I have read through all the posts ..... I would still feel dissapointed and somehow let down if the person closest to me did not even mention it or discuss it at least.
If I love someone and I know I can better their lives somehow... I will try all that is possible... I will overlook the scared, the pain and the discomfort and do whatever it takes to help.  I would want that from my husband/lover/companian.

I won't ask him for a kidney.... If he doesn't offer it .... I would be sad.

My hubby is not able to donate because he has heart problems........ but I know that he would if he was able to.

After all things said I just want to let you know... I am sorry that he hasn't even talked about it. I hope you can somehow get through this.
 

[jpearce]

With me and my hubby, he hasn't been tested and nor do I want him to be. I don't want to take that risk, I am unable to work so he's the bread winner here and if something happened to him, I don't even want to think about it. Talk to your man, once the door is opened things seem to happen. Good Luck