Not as popular as I thought

[brandywine]

It's been about 10 months now since I started dialysis, and I have to say that I'm really starting to get my feelings hurt that NOBODY is offering to donate a kidney. I thought I would have been transplanted by now. My brother was a perfect match, but denied for blood pressure. Both of my parents have passed on. Many others who are very close to me, and would offer, would easily be disqualified for various reasons. There are still many friends, and family that have not asked or mentioned anything though-and I have been an open book about my situation. I even posted the information on Facebook.
I think I'm getting down a little, because I've lost 5% function in the last two months, and I'm really starting to feel sick. It's getting harder to pretend like nothing is wrong with me.
I don't fault anybody for not wanting to donate. That's a big deal. Huge. But at the same time, I'm really disappointed.
I'm curious, how are you doing with finding a donor? And do you feel like I do?

[mcclane]

I posted something like this in the general discussion, Transplant : lost all hope.

Like you, i've lost pretty much all hope/optimism for a transplant.  it has been close to 4 years on the wait list and the phone hasn't exactly been ringing off the hook.

My mom did get tested last year, but due to her weight/bp they would not do the transplant.  My aunt stepped forth, but was not a match.  So now, we're redoing all the tests again for my mom.  Unlike last time, I'm not at all optimistic this time around.  It just feels like one roadblock after another.

So now, what i try to do is block transplant out of my mind.  I try not to think about it at all, as i know it will just get me down.  It isn't easy, but I try.

I know that my wife/parents care about me alot, so I just focus on that.

[MooseMom]

I know how you feel, believe me, and I know there are many, many people with CKD/ESRD out there who have found, like you, that living donors are very rare.  It is an emotional element of this disease that makes it harder to cope.  It makes you question how people see you, and it makes you question the compassion of those around you.

I could tell you some of my own experiences in this regard, but they'd serve to depress you even more, so I won't go there.

I, too, am open about my situation.  There are three guys in my neighborhood who are, at first glance, pretty healthy although I know there is a risk in assuming that.  They are all single.  One recently lost his job because his company wanted to relocate him and he refused to move to the other side of the country; he got a generous severance package instead.  Anyway, they all know I am waiting for a kidney because I sorta joke about it, but none of them have stepped forward to even offer to be tested.  Mind you, we are not close...just passing neighbors, but they all seem to be nice people.  They owe me absolutely nothing, but I often wonder what they are thinking.

My husband does not share my blood type, but he had expressed willingness to be part of a paired donor thingey.  Well, he's afraid that he is predisposed to diabetes (and he may well be right), but he is too scared to go through the testing process because he's afraid they might find something he doesn't want to know about.  Believe me, I understand that fear, but what messes with my head is the fact that I can't run away from that fear, but he can, and he does.  But there will come a day when he watches my health decline, and I suspect that he will watch me slowly die and will always wonder if he could have prevented that.  I do worry that he will end up living with a lot of regret.

One thing that he has done for me, though, is to post on the electronic bulletin board at his place of employment about my need for a kidney.  You never know when/if someone might see it and might decide they'd like the opportunity to save a life.

I understand your disappointment, and trust me, it is a sentiment that is shared by so very many people.

Pretending that nothing is wrong with you won't spur people to help, so it might be an idea to be totally honest about your health status. 

[Subeat]

I hesitate to respond since my experience has been so different.  But maybe it will restore faith and hope in mankind just a little. 

From the moment I was diagnosed at the beginning of August, I have received multiple offers of family/friends wanting to know what they need to do to get tested.  Two of my siblings are out because of their own health, the other is likely less willing (though he did offer, I don't think he would go through with it).  All 3 of my sister's daughters have volunteered, but either don't match or don't know their blood type.  I have a close friend that offered and is a blood type match.  Numerous friends from high school (via Facebook) have offered.  I even heard from my best friend from middle school, that lives in another state, and that I haven't seen in 20+ years...wrong blood type too.

As of now, our plan is to have my husband tested.  He is also willing to do a paired exchange if he can't donate to me directly.  My son is also quite willing to donate (he will be 18 in November).  I am reluctant to go that route for many reasons, not the least of which is that my ESRD was caused by PKD and he, or my daughter may need that kidney someday. 

We are actually quite open about it.  People are always asking how I'm doing and if I need anything, and dh and I tend to respond with "yeah, a kidney" each time.  We do it in a light kind of way, so we don't freak anyone out, but more than one has responded that they will be tested if we need them.

[jeannea]

I feel kind of like you Brandywine. I have lots of relatives and other people I know. The only person who wanted to get tested was my dad and he's the wrong blood type. (My mom donated 13 years ago to me.)  My brother hasn't even offered. Sometimes I feel like I should give up because I don't have enough value that anyone wants to save me. Although my niece says she would but she's under 18. Isn't she sweet?

[sullidog]

yes I understand where you're coming from. Mine have asked but decided that family was more important, which I understand.

[Atooraya]

Look I understand where u r coming from. I've been dealing w kidney disease for four years. But I honestly think your expectations of people r 2 high. Its not easy to yank out a perfectly good organ and hand it to your next door neighbor. It's a huge phsychological and physical trauma. It's very difficult because it puts the donor at a disadvantage. Several people in my family have offered to be tested. I've turned them down. I can't bring myself to put a member of my familys life injeopardy to save my own skin. I hope I don't come across as crass. But those r my true feelings.'     

[MooseMom]

Look I understand where u r coming from. I've been dealing w kidney disease for four years. But I honestly think your expectations of people r 2 high. Its not easy to yank out a perfectly good organ and hand it to your next door neighbor. It's a huge phsychological and physical trauma. It's very difficult because it puts the donor at a disadvantage. Several people in my family have offered to be tested. I've turned them down. I can't bring myself to put a member of my familys life injeopardy to save my own skin. I hope I don't come across as crass. But those r my true feelings.'   

I personally would find it difficult to live with myself if I knew that someone was suffering and I had the power to help.  I have higher expectations of myself.  I had been a blood donor for years before my kidney condition reared its ugly head, and I used to fantasize that my pint of blood would save someone's life.  I know it's not the same as being a kidney donor, but to have the opportunity to change the course of one person's future is heady stuff. 

No, it's not easy to "yank out" a perfectly good organ, but many people do it (though not enough), but I for one have never taken the easy way out especially if I witness suffering.  I hope I don't come across as preachy, but those are my true feelings.

[okarol]

I think if you asked most people what they know about kidney failure they would say, "There's dialysis, which works well, or you get on the list." I truly do not think people know that living donation is an option. To be honest, I thought there was an organ bank somewhere, with frosty compartments of kidneys or livers, on ice - really - how I could be so uninformed - I don't know. I did know about living donation, somewhat, but just thought it was for a better match. I had no idea people waited years for a transplant.

I think it's good to have an advocate help tell your story. I am much better at cheerleading for Jenna's cause than I ever would be for myself! If you can find a sister, brother, cousin or friend and say, "The doctors have said there is a __ year wait for a deceased donor transplant, and suggested I consider a living donor. It's hard for me to ask for help, but would you consider helping me get my story out there, so maybe a donor will hear it and offer to get tested?"

Then they can contact your college alumni newsletter, the local paper, facebook, twitter, craigslist, church bulletin board, post on websites and send out an email and ask others to pass it on. It's like a job. If enough people see your story it improves your chances.

That's what I plan to do.

[Poppylicious]

I know that Blokey's biggest disappointment is that his brother has never offered to donate a kidney.  I don't for a second think that he's never talked about it though, and assume that for reasons best known to himself he decided not to offer.  That was his choice to make and it doesn't mean that he loves him any less or doesn't value the bond that they have.

*puts on living donor hat*

I personally would find it difficult to live with myself if I knew that someone was suffering and I had the power to help.  I have higher expectations of myself.  I had been a blood donor for years before my kidney condition reared its ugly head, and I used to fantasize that my pint of blood would save someone's life.  I know it's not the same as being a kidney donor, but to have the opportunity to change the course of one person's future is heady stuff. 

By 'heady stuff' do you mean 'powerful'?  I have no wish to be a 'hero' or to be seen to be a 'hero'. I don't even have high expectations of myself.  I'm under no illusions; I know that the transplant could fail, that I could die, that Blokey could die, that I might need dialysis/a transplant myself in the future.  I know that it's not a cure and one day we WILL have to go through the pain and frustration of ESRD again (mostly because of our age, and with the saving grace that we'll know what to expect and what to look out for).  Although the transplant will be a life-changing event, our lives will still be controlled by the kidney.  I don't fantasize that my kidney will save Blokey's life; I'm just grateful that it's going to give us more quality time, give his life some quality and make him feel better.  As Atooraya rightly says, it is traumatic, both psychologically and physically.  Not necessarily just for the donor, but for the donor's family (I know that I'm putting my Mumsy through real scaredy-ness with this, but she's not telling me which means she's telling someone else, and her scaredy-ness feelings are becoming their scaredy-ness feelings, on her behalf).  It isn't a decision that can be taken lightly because there are far too many other things/people to consider and it isn't as easy as asking, Who wouldn't want to save a life?

*takes off living donor hat*

brandywine, I'm really sorry you feel that nobody cares. As MM says, don't pretend that nothing is wrong with you.  People seeing that you ARE ill could be the little nudge that will help them make that choice to offer a kidney.  And I like okarol's idea too.  Get your story out there! 

*huggles*

[MooseMom]

Poppy, you and I both know that there is nothing about ESRD/dialysis/CKD/getting a transplant/being a donor that is easy. 

By "heady stuff", I don't mean "powerful" in the conventional sense of the word.  You've seen how your blokey has struggled on dialysis.  You don't want him to keep suffering, do you?  You want to see his life extended, right?  You want him to be as healthy as possible, true?  You have the opportunity to make all of that happen.  How does that make you feel?  If one is considering becoming a living donor, of course there are lots of things to think about, but frankly, it IS as easy as asking yourself, "Do you want to save a life?"  If you don't want to because you have other people to consider, then the answer is "no", and it is as easy as that.  If there are a myriad of reasons why you don't want to take this very difficult step, then you just say, "no".

If you are worried about your mother's worries, you can always back out, Poppy.  Blokey can wait for a cadaveric kidney, and then there won't be this angst about it.  You can back out at any time; it is your body and your right.  As you've pointed out, kidney donation is a huge deal, and if you think you will regret it, then don't do it.  It is important that you try to imagine you will feel after the op.  Will you feel happy that you've helped another human being, or will you possibly feel resentful if things don't go well and you feel that you've made a sacrifice that you will regret?  That could drive a terrible wedge between you and Blokey.  But I'm sure you've thought of all these things.  But know that you can always change your mind.

Maybe it's just me.  I am certainly no saint by any stretch of the imagination, but if I knew that someone was suffering and that I could possibly help, like I said before, I would be ashamed if I didn't at least try.  If for health reasons or for other valid reasons I could not, I would do what I could do.  It's not about being a hero, rather, it's about being able to look at myself in the mirror every damn day and being satisfied with my reflection.  Maybe it's because I know what it is like to feel fear and illness; I cannot bear the idea of someone else feeling the same and me just standing by, doing nothing. 

Your lives will be "controlled by the kidney" for maybe the first year or so as the meds get worked out, but if you ask most people on IHD if the kidney controls their lives as much as dialysis did, I'd wager that the answer would be "no", otherwise, why do it?

As for Blokey's brother, I'm not going to pull any punches here, but I do recognize that I know absolutely nothing about either Blokey or his brother.  But I viscerally feel that if there is indeed some valuable bond between them, then the least his brother could have done is to explain to him, face to face, man to man, brother to brother why he does not want at least to be tested.  He may have a very good reason.  Maybe the reason is simple fear; that is a very valid reason, and if it is that, then I'm sure that because of this marvellous fraternal bond, your brother would understand.  But if it is true that Brother of Blokey has never even TALKED about it, never even had the courage to say, "Look man, this is just something I can't do," then I submit that there is something sadly lacking in that relationship.  It takes a lot of courage to be a donor, but it also takes a lot of courage to say "no."  What you DON'T do is just sit silently on the sidelines and ignore your brother's plight.

(About a year ago, I had someone offer to be my living donor.  She was a doctor and understood more than other people what kidney failure meant and what a major operation is all about.  Then I didn't hear a word from her for months and months.  She finally called me at home and told me that her husband didn't want her to do it; they have two young children, so I am guessing that they are the reason.  This woman owed me nothing; she could have just ignored it all, but she had the guts to call me and tell me herself.  That couldn't have been easy for her to do.  That took courage.)

brandywine, Okarol is right in that people who don't understand kidney disease don't know the first thing about transplantation, either.  I would like to tell you not to take it personally, but that's not easy.  It's about as personal as it gets.  By what I have witnessed myself, most people still think that a living donor has to be a blood relative to the recipient.

[cariad]

My anthropological self is delighting in this conversation. Fascinating how individuals conceptualize altruism, motivations and reciprocity.

I just got out of a lecture on the evolutionary evidence and purpose of compassion, so this is so very on topic. But I won't comment further for fear of going too far into abstraction and not addressing the real-world issue here.

Brandywine, it's a difficult situation. There could be quite a few factors at play - ignorance over the process, fear, social or economic factors that you may or may not be aware of that would prevent someone from coming forward. I sympathize entirely with your hurt feelings. I always assumed that my husband would be my donor, and when he didn't get in there and fight for his opportunity to donate to me, it caused a major rift. He did not get it. Donors show willing or they won't be donors. It all came right in the end, but I remember the awful feelings that you describe.

I am struggling with this right now for myself. I asked my surgeon if I could be considered as a live liver donor now, and I don't remember exactly how he put it, but the clear message was 'never'. The thing is, I don't believe him. There are so many mind games that go into being a donor that I feel like if I wanted it enough, I could convince a transplant doctor somewhere to let me have a shot at helping to save a recipient's life. If I could, would I go through with it? I also wonder if I would go through with bone marrow donation. I watched my original donor suffer and suffer only to have the recipient die. I also am not clear on how desperately exact matches are still needed. Is it like kidney failure where the strength of the match is no longer the primary issue? See, even among recipients ignorance and confusion are rampant....

[HouseOfDialysis]

My donor is being evaluated, but his family isn't thrilled about it.

[brandywine]

Look I understand where u r coming from. I've been dealing w kidney disease for four years. But I honestly think your expectations of people r 2 high. Its not easy to yank out a perfectly good organ and hand it to your next door neighbor. It's a huge phsychological and physical trauma. It's very difficult because it puts the donor at a disadvantage. Several people in my family have offered to be tested. I've turned them down. I can't bring myself to put a member of my familys life injeopardy to save my own skin. I hope I don't come across as crass. But those r my true feelings.'   

I felt that way at first too, about not being able to accept. And for some, I might still turn them down even if they did offer. I guess the difference with you, is that several people you know have actually offered. It's a different feeling when you don't have the option.

[brandywine]

Okarol-You are right on target. Great advice.
I also know that if I always act like everything is okay, then nobody will feel a need to help me because as you said, "there is dialysis and the list".

 I think when people feel a sense of urgency, and see someone suffering, that the urge to act is much stronger. Truthfully, the only person who has seen me "suffer" is my husband, and the FIRST time he saw REAL suffering, he offered to get tested. He's a different blood type, and my caregiver, and we don't have much in the way of backup-so not really an option, but what it did tell me is that when people start to see me go downhill, the interest in helping might go up.

[mcclane]

this was mentioned before, but I believe that people think that the only way a donor can happen is if someone dies.  There is really no publications or media attention on living donor programs, or even the buddy donor programs.

My wife has let alot of people know about my medical situation (i think she is hoping someone else besides close family members will step up to the plate), but no one has.  All I've received is "hope you get one soon".

*sigh*

[MooseMom]

Look I understand where u r coming from. I've been dealing w kidney disease for four years. But I honestly think your expectations of people r 2 high. Its not easy to yank out a perfectly good organ and hand it to your next door neighbor. It's a huge phsychological and physical trauma. It's very difficult because it puts the donor at a disadvantage. Several people in my family have offered to be tested. I've turned them down. I can't bring myself to put a member of my familys life injeopardy to save my own skin. I hope I don't come across as crass. But those r my true feelings.'   

I felt that way at first too, about not being able to accept. And for some, I might still turn them down even if they did offer. I guess the difference with you, is that several people you know have actually offered. It's a different feeling when you don't have the option.

This is true;  if people have offered to be tested and you have turned them down because you want to protect them, then that is your choice, but at least you've had a choice.  It's knowing that no one has offered to even be tested that makes you feel so awfully sad and disappointed.  If someone takes the time to tell you why they cannot or will not be tested, then that's fine.  It's the silence that is so disturbing, that feeling that everyone is ignoring your because they don't want to be have to think about your dilemma. 

On the other hand, I've come across one or two people who have offered but have done no more than that.  Sometimes an offer is merely an attempt for someone to feel good about themselves, nothing more.  When an offer is followed up by actual testing, then consider that golden.

All you can do it to make your situation known.  Now is not the time to go all wobbly and hide behind a veil of privacy.  If people don't know you need help, how are they supposed to guess?

brandiwine, what does your husband do to advocate for you?  How about HIS friends, family and co-workers?

[*kana*]

I am sorry that you are feeling so down about your situation.  I choose to not tell anyone about my problems because it was easier for me to not know if people would volunteer or not.  I did have one friend that I told and she was the one who decided to go ahead with donating to me.  I even enjoyed it so much when my friends would tell me they'd do it if they could.  That meant so much to me and almost as much as if they went ahead with it.  Just the thought that they would do it was enough for me.

People are scared of their own health and that is totally understandable.  People are also afraid to give up a kidney if they have kids just incase their kids need one.  But you are someones kid that needs help.   Hang in there, you are loved by your friends.   

[MooseMom]

Hang in there, you are loved by your friends.   

Well you see, that's just it...you don't know that.  You thought you were loved, but when your friends and family conveniently ignore your problem, you seriously start to wonder.

[*kana*]

Hang in there, you are loved by your friends.   

Well you see, that's just it...you don't know that.  You thought you were loved, but when your friends and family conveniently ignore your problem, you seriously start to wonder.

Have you ever seriously turned it around in your head?  I know most people would jump up and down and say they'd donate to a friend if situations were reversed, but you have lived renal failure so you know what it feels like.  It tends to change how you feel.  I'm living renal failure and I "think" that I would donate, but it still is a very very scary thing and I don't know 100% that I would unless I "saw" my friend on her/his deathbed.
I don't think you can base their level of love for you on whether they'd do this or not.  My mother loves me more then anyone in this world, but I know she knows she can't donate so she hasn't even offered.  Many people have diseases they don't discuss and some of those would prevent them from donating so they don't even offer. 
Sometimes friends and family don't see how bad you are doing and think you are handling dialysis well enough to wait to get a cadaver kidney.   There are so many feelings, beliefs and thoughts that run through peoples heads that prevent them from donating.
I know exactly what you are saying and have run those same  troubling thoughts through my head about not being loved enough, but there is so much more to it mentally.  I'm just at the point where I accept that others DO love me to a certain level but maybe not enough to give an organ and I am ok with that now.  I wasn't in the beginning but I have made peace with it now.
Perfect strangers donate to people they don't know and that isn't based on love.  That is based on the type of person that individual is.  Your friends and family might not be that kind of person.   I might be way off so don't hate me......  I am just trying to mentally deal with it all like you all are.     
     

[brandywine]

Kana
Good point that there is a certain "type" of person that will even give to a stranger. And I can see that the people quick to ask me questions about it all have that "thing" in common.

Moosemom
I know that my husband shares my story with people, but I don't know that he's explicit about what I need. We should definitely have that discussion.

[MooseMom]

*kana*, all of your points are well taken and are certainly things I have thought about before.  Far from hating you, I am grateful for your thoughts on this matter; learning how other people cope and how others perceive this matter is very valuable.

You are right in that we may not know of other peoples' situations that might make them either ineligible or merely fearful.  Just as a lot of us here don't like others to know of our disease, other people may feel the same way, so we shouldn't judge.

What bothers me is the silence.  I personally feel that if someone loves you but does not want to donate to you, or CANNOT donate to you, then out of love, they should explain this to you.  Now, I don't think a loved one is OBLIGATED to do this, but it just seems to me that if you love someone, then you find the personal courage to tell them why you cannot help them in this particular way.

As for my own personal case, I have a cousin who got a kidney transplant (no one in the family offered to be tested; he got his kidney from a friend), I had an elderly aunt who spent 7 years on dialysis, and then my own mother spent 5 years on D before she died.  And then there is me who is about to go into renal failure, so by sheer coincidence, my family has a lot of experience with dialysis (and none of us have the same renal disease; just goes to show how all kinds of things can cause renal failure).  So the "I didn't know how ill she was," or "I don't know anything about kidney stuff," just doesn't wash in my case.

Maybe we shouldn't measure love by whether or not someone would offer to be tested, but we're all human, and so often we DO measure it in just that way.  I have gone past measuring measuring "love", however, and have reached the conclusion that it is about simple human compassion and personal courage.  Like I've said before, it takes courage to tell someone "no".  Again, it's the sound of crickets that is heartbreaking.

I've come to the conclusion that maybe it is best if I serve my time on D and wait for a cadaveric kidney.  I then won't be beholden to anyone.  I won't have to thank anyone or worry about how the donor is doing.  I won't have to live my life with this responsibility for another person's well-being, another person's sacrifice.  So, I've put it all on the back burner and I don't think about living donation anymore. 

[rsudock]

As I have dealt with this crazy journey called ESRD I find my views change about living donation....on dialysis I did feel like my family let me down and didn't love me, when no offers came to donate. After transplant I am still not super close to my extended family, but I have forgiven them and let go of it. I am sure when the time comes to go back on the machine I will probably hate them again....

My 2nd kidney was from an altruistic living donor. A husband of a coworker...he doesnt' know me, we aren't that close...his wife and him heard of my plight and decided to get tested. It takes people who do believe that they are on the Earth to do good to be living donors. I am ever so so grateful, but there are times I feel like I indebted to them. Time and time again I say thank you and all he says is, "You don't owe me anything, I was willing and am still glad I did it."  It really does take my breath away....  I just get so scared that something bad will happen to his remaining kidney function...how would I live with myself knowing that indeed I did cause him to go into kidney failure...it's a thought I can't even bare....

so sorry Brandywine...thinking of you...

xo,
R

[MooseMom]

rsudock, there is nothing psychologically easy about any aspect of transplantation.  If you had received a kidney from a deceased donor, chances are you would feel bad that you got a chance to live a normal-ish life while someone else had their life end.  We talk about how donors are heroes, but I something think that what recipients go through emotionally goes widely ignored.  It takes courage to allow someone to be your hero.

Donating a kidney does NOT cause renal failure.  If it did, transplantation from a live donor wouldn't be allowed at all.  Sure, there is a chance that something else may cause your donor's other kidney to fail, but I think that you have to trust your donor.  Trust that he did his research and thought long and hard about the possible consequences. 

His donation has allowed you to "pay it forward" through your work with kids with renal problems, and I hope you will take some solace in that.  You are in the position to do a lot of good for a lot of people; you don't give yourself enough credit.  You deserve your hero.

[teachwalking]

If ever a post makes me realize I must be in the moment, it's this one. I think about all the reasons I had to leave my man in the past and never did, and now it's unavoidable that he will leave me. I am so going to work on being in the moment. At this moment, reading these posts, I am strengthened because I can read so much true love. Really. It's one thing to say "I'd catch a grenade for ya" and it's another thing to do it. From what I just read, I probably won't be able to give miy kidney to my man, but I'm trying to be in the moment, and at this moment, there is a lot of love in this room. Thanks.