Not as popular as I thought

[MooseMom]

teachwalker, I've gone back and read all of your previous posts, and forgive me for saying so, but they are awfully cryptic.  I don't wish to intrude and pump you for information you'd rather not divulge, but if you could give us a bit more information about your man's kidney condition, perhaps we could give you more tailored advice and support. We have members who are pre-dialysis and members who are pros.  We have members who use every different modality, so there is a wealth of information on this site.  If none of us have answers to your questions, we can perhaps guide you to a place where you can find more in-depth guidance and research.

Yes, living in the moment is all well and good, and it has its place, but we all have to have some semblance of a plan for our future.  We have to assess how hard we are going to fight and just how much we are willing to do to live as healthily as possible for as long as possible.  We can't allow ourselves to do nothing other than wander around aimlessly "in the moment."   

[teachwalking]

Thanks and ok. Pic is coming. So is everything else. I will watch my words and be as straight as I can. I will watch the style. Thanks. M.

[The Noob]

want to get rid of someone you don't care for? ask them their blood type.

out of everyone we have known, family/friends, the only 2 who stepped up to be tested was my daughter and her fiance. they were both a match, which is a miracle, and the young man is still adamant to donate. now heres the catcher, its the transplant hospital that is so slow. we're all ready to go, but they apparently are too busy to move this to its conclusion.

definitely, i think, its a lack of education about organ donation. most people we knew when this started out just believed he would automatically be put on the list and receive a transplant.  not a clue about all the criteria that had to be done first. or wait times or whatever. his family has been the worst. making comments to me about "getting the ball rolling" for him..without of course any help from them, while i am running myself ragged and he is in the hospital for the 30th time in a year and a half.

if i were not diabetic, i'd be all over it to donate. and MOM, yes, someone donated blood somewhere..that saved my husband life when he was first diagnosed. so yes, you did a good thing! he needed those transfusions or he wouldn't have made it. you go MOM!

 

[Poppylicious]

If you are worried about your mother's worries, you can always back out, Poppy. 

Me worrying about my mother having worries is not going to make me back out.  She's 100% behind me and if she wasn't there is no way on earth that I would be able to go through with it; I just don't like the fact that I'm putting her through the worry that comes with me, her only daughter, having a major operation that I don't need.  I was simply pointing out that there are other people to consider.

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?

The kidney will control our lives in the sense that in the back of our minds we will constantly live with the fear of having to go down this road again, whether that's just a few months later or in thirty years. It will change our lives for the better, but the control and the uncertainty of the future, will still be there. This will not affect our ability to enjoy life; it will just be a part of our life.

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.

As you say, you know nothing about the relationship between Blokey and his brother.  I think they (and their extended family) would both be absolutely devastated to think that their relationship lacks *something* just because they didn't sit down and have a heart-to-heart about it.  I didn't say that my BiL had sat silently, ignoring the plight of Blokey.  I don't doubt for a second that the conversation has at least cropped up with my MiL and his girlfriend.  I also know that Blokey umm'd and ahhh'd a lot before making the decision NOT to ask if my BiL would be willing to donate, and by then we'd decided that we would have a go with mine.  That was his decision to make just as much as not offering (and not bringing it up) was my BiLs.  To be fair, it was a given that I would offer mine anyway ... if I hadn't been compatible then perhaps my BiL would have offered, but we may never know that now and we're not going to make a big deal out of finding out.

[Subeat]

want to get rid of someone you don't care for? ask them their blood type.

out of everyone we have known, family/friends, the only 2 who stepped up to be tested was my daughter and her fiance. they were both a match, which is a miracle, and the young man is still adamant to donate. now heres the catcher, its the transplant hospital that is so slow. we're all ready to go, but they apparently are too busy to move this to its conclusion.

definitely, i think, its a lack of education about organ donation. most people we knew when this started out just believed he would automatically be put on the list and receive a transplant.  not a clue about all the criteria that had to be done first. or wait times or whatever. his family has been the worst. making comments to me about "getting the ball rolling" for him..without of course any help from them, while i am running myself ragged and he is in the hospital for the 30th time in a year and a half.

if i were not diabetic, i'd be all over it to donate. and MOM, yes, someone donated blood somewhere..that saved my husband life when he was first diagnosed. so yes, you did a good thing! he needed those transfusions or he wouldn't have made it. you go MOM!

I think the above is so true.  I had family members asking about "the list" before I was even out of the hospital...as if my diagnosis alone was enough to get me on there immediately.  I still have to field the questions every time one of them calls or the topic of my health comes up.  I suppose I can't fault them too much, since my own knowledge of the process was pretty lacking until circumstances forced this education upon me.

[rsudock]

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.

Never have I met a more truer friend than you....thank you Michelle...it means more then you will ever know!!!

xo,
R

[MooseMom]

Thanks and ok. Pic is coming. So is everything else. I will watch my words and be as straight as I can. I will watch the style. Thanks. M.

Oh no, I don't want you to think I'm chastising you for your "style" or am demanding that you watch your words!  I want you to write whatever you feel like writing, no more and no less.  If I have missed some information you've posted elsewhere, I'm sorry for being dense.

@poppy, that's certainly fair enough.  I just offered my opinion on a situation that I vociferously admitted knowing nothing about, and as long as you're fine with how things are in Poppy and Blokey World, then that's all I care about.  My opinion is completely and utterly irrelevant.

@rsudock,    I really wish you could have come to Vegas; I was so looking forward to meeting you and Aaron!

[rsudock]

Thanks and ok. Pic is coming. So is everything else. I will watch my words and be as straight as I can. I will watch the style. Thanks. M.

@rsudock,    I really wish you could have come to Vegas; I was so looking forward to meeting you and Aaron!

I was soo looking forward to meeting YOU and the other IHDers who have made me feel cared for while struggling this past year...I will never forget your kindness! I haven't given up hope that next year I will be there! Aaron will have his "big boy" job so, things look much favorable with both of us pulling in the money!

xoxoxo,
Rachel

[ToddB0130]

This is a great thread.  Very insightful.  Definitely made me think.  I have five nephews in their early 20's to early 30's .... Upthread someone mentioned folkd not offering because some time in the future they might have kids of their own that might need a donation .... that really struck me and I think if any of them offered at this point,  I'd seriously consider declining their offer.  It really is a huge, huge sacrifice and I can totally understand folks not making the offer. 

[okarol]

Living donation is not for everyone. You never know where your miracle will come from and you need to reach as large of pool of potential donors as you can. Limiting it to family and friends puts a huge burden on a small group of people - some of whom might donate but just as likely is the chance they wouldn't.
If you have time, check out some experiences from the living donors perspective here: http://www.livingdonorsonline.org/experiences/experiences.htm - you'll see that there is no profile of the kind of person who will donate. They all come to from a unique set of circumstances and timing.
Getting your story told over and over is what will help your donor find you!

[cariad]

This is a great thread.  Very insightful.  Definitely made me think.  I have five nephews in their early 20's to early 30's .... Upthread someone mentioned folkd not offering because some time in the future they might have kids of their own that might need a donation .... that really struck me and I think if any of them offered at this point,  I'd seriously consider declining their offer.  It really is a huge, huge sacrifice and I can totally understand folks not making the offer.

Todd, I think with the pace of medical technology, it really does not make sense to decline a kidney now for children who show no current issues, or are not even in existence yet. I am a realist to the core, yet even I think that dialysis as a treatment will be eradicated in the next 20-30 years. Dialysis can be a really rough go, I would carefully consider any offers for donation from one of your relatives. Also, children in renal failure are an incredibly rare breed. Yes, we have many examples of former dialysis children here, but this is a clear case of sampling bias. Unless your kidneys are failing due to a hereditary illness that strikes very young, I don't think future children should factor into your decision.

That is not to say that this is an easy decision without great points both pro and con. I struggled with it myself, but in the end, had my two children tested for any signs of renal failure and then went through with accepting a kidney from my husband.

[ToddB0130]

Thank you so much for your insight, Cariad.   Right now I am pre-D (with fistula)  ..... herre's hoping I stay pre-D for awhile longer.    I really appreciate your feedback and am rooting for Gwyn and your family with regards to the present job situation.  I am touched by your 'secret savior' story.

[rsudock]

I know when people talk about not donating a kidney to somone (ie family member) because there child may need one it makes me cringe. I totally understand why they feel the way they do, but at the same time it is like they are saying "well your life is less important then someone in my immediate family." I just find it so bizarre...I could understand if their family had some genetic disease though....

My Aunt Carol is looking into giving my brother a kidney because now she says"I am old and my kids don't need it, so you can have it"  I mean it is a nice gesture but it just strikes me as odd...Neil has suffered for awhile and she will probably go to her grave with 2 kidneys....c'est la vie

xo,
R

[The Noob]

i've found with my side of the family, all or most of them have been very supportive, to the point of being tested. on the "other" side..they all want to party and not worry about their dad, so they make up reasons why not even to offer getting tested. their reasons have been to blame us in some way, which i believe is their own guilt motivating that. even if a family member does not want to be tested, they could send an encouragement card or thank you to patient/caregiver. but then that might interfere with the partying..and lord knows what that can do to a potential organ. basically i've said to heck with them. and glad to do it.

[brandywine]

Update: Possible living donor
A complete stranger overheard someone ask my husband how I was doing and she inquired. Afer hearing about my situation, she gave him her contact information and I called her. I was disappointed when I found out she was almost 68 years old. She said she would call the transplant coordinator to see. Oddly enough, they are going to test her!

[malaka]

That's good news. 

My personal concern about family as living donors is caused from the inability of my nephros to tell me what is the likely cause of my CKD -- membraneous nephritis.  They call it "idiopathic" which is medical speak for "we don't know what caused it."  Nobody can rule out genetic factors, and some recent research points to genetic susceptibility.  If so, I am hesitant to have kids in the donor pool.  My kidneys have lasted 59 years, but I've had 2 of them. 

Also reluctant to have my wife tested since there is a big issue about who is going to care for two invalids after we're discharged from the hospital. 

So, I'm on the cadaver list.  With approximately a 5 year expected wait time. 


Just officially hit Stage 5 with a GFR of 14, so dialysis is looming.  Yet that hasn't changed how I feel (so far) about family donations.

[okarol]

I can understand being reluctant to have family tested, but if they want to I would not turn them down. If there's a genetic question about the possibility of ESRD coming up, the transplant team would rule them out as donors.
There are so many people who do not have any living donors that can or will donate. Each time a patient receives a transplant from one of their family or friends, it means that others who wait on the deceased list will come closer to getting a kidney.
You're fortunate the wait time is only 5 years. It's now a 10 year wait for O blood type here in Los Angeles.

[beachbum]

I'm a little late responding to this post because this is the first time I've read it but I can completely relate. You are not alone. Actually, just reading this post makes me feel less alone.

When people you care about don't step up it makes you feel very unworthy. It puts you in a very tough spot. You have to respect their reasons for not coming forward but at the same time you feel like something is wrong with you. Especially when you hear stories about other people finding a living donor or having multiple people step up and get tested.

My situation is a bit different. I have never had a great relationship with my family. I actually dreaded the day I would have to tell anyone in my family that I needed a kidney. The people in my family are bad people. I got one half of my family that abuses drugs and alcohol, and have most of their lives, so that pretty much eliminates them. The other half think they are better than everyone and that (their you know what) doesn't stink. I knew nobody would look into getting tested but I had to try. I regret now that I even told them. It actually just made everything worse.

My own brother is 3 years younger than me and in perfect health. He asked me late last year in an email what my blood type was. I didn't know at that point, I hadn't even begun the process yet. I explained to him that I had to find out and explained the process to him. Once I got the ball rolling and found out what I needed to know I let him know. I also sent him my transplant cordinator's info that he needed. He never wrote back to me. Over the next couple of months I followed up with a couple more emails and still nothing. I guess I at least expected an email back saying, sorry bro, I can't donate, or I don't want to, or anything, or just hey, I'm praying for you. I got no response. Not even a facebook message asking how I'm doing. A year later, still nothing.

My mom's side of the family is the side that are stuckup. I needed her to at least get the word out but she wouldn't even go that far. I don't know them that well but my mom has constant contact with them. All my mom said to me was "dialysis really isn't that bad, you'll be fine." I'm 37 years old. That's not acceptable. I'm going to fight for my life.

All I can say is my family is just cold-hearted. But they always have been. I feel stupid for humbling myself when I already knew the answer. I feel like I was begging for my life and they were getting off on that. I have always been independent, I even left home the first time at 13 years old. That's always been my life. I'm very free-spirited. I feel like that was taken away from me. But then again that's probably why I was always so free-spirited even when I was young. I was able to get that out of my system at a young age. My family always resented that.

There are other things wrong with my family but I won't get into that here. I had a few friends say thety wanted to give me a kidney but I don't think they really understood what that really meant. I also had a few other friends say they contacted my cordinator but I wouldn't be surprised if they were just trying to comfort me or be nice. Because of confidentality laws I'll never know. Mostly, nobody has seriously stepped up for me.

I struggled with this for a long time. And I still do at times. But it's getting easier. We read stories about people that find their match but I think those are the lucky ones. I'm not saying it won't happen or can't, I just think there are more people like us, that don't have friends or family willing to donate, than there are the people that have it. It helps to know that there are others in the same boat. But you should never blame yourself. You are worthy.

[okarol]

We met our daughter's donor on the internet, on Living Donors Online. Another friend was offered a kidney from a friend of a friend through facebook. I know one of our member's here met their donor on Matchingdononors.com and another found his donor on craigslist. There are countless stories of strangers donating to patients, every day. Don't wait for people who are unable, unwilling or not interested to donate. If you tell enough people, and you keep your story visible, you can find a donor. It's not easy, but it's better than sitting around wondering why no one cares. They just aren't the right people. Widen the circle and it can happen. 

[rsudock]

I'm a little late responding to this post because this is the first time I've read it but I can completely relate. You are not alone. Actually, just reading this post makes me feel less alone.

When people you care about don't step up it makes you feel very unworthy. It puts you in a very tough spot. You have to respect their reasons for not coming forward but at the same time you feel like something is wrong with you. Especially when you hear stories about other people finding a living donor or having multiple people step up and get tested.

My situation is a bit different. I have never had a great relationship with my family. I actually dreaded the day I would have to tell anyone in my family that I needed a kidney. The people in my family are bad people. I got one half of my family that abuses drugs and alcohol, and have most of their lives, so that pretty much eliminates them. The other half think they are better than everyone and that (their you know what) doesn't stink. I knew nobody would look into getting tested but I had to try. I regret now that I even told them. It actually just made everything worse.

My own brother is 3 years younger than me and in perfect health. He asked me late last year in an email what my blood type was. I didn't know at that point, I hadn't even begun the process yet. I explained to him that I had to find out and explained the process to him. Once I got the ball rolling and found out what I needed to know I let him know. I also sent him my transplant cordinator's info that he needed. He never wrote back to me. Over the next couple of months I followed up with a couple more emails and still nothing. I guess I at least expected an email back saying, sorry bro, I can't donate, or I don't want to, or anything, or just hey, I'm praying for you. I got no response. Not even a facebook message asking how I'm doing. A year later, still nothing.

My mom's side of the family is the side that are stuckup. I needed her to at least get the word out but she wouldn't even go that far. I don't know them that well but my mom has constant contact with them. All my mom said to me was "dialysis really isn't that bad, you'll be fine." I'm 37 years old. That's not acceptable. I'm going to fight for my life.

All I can say is my family is just cold-hearted. But they always have been. I feel stupid for humbling myself when I already knew the answer. I feel like I was begging for my life and they were getting off on that. I have always been independent, I even left home the first time at 13 years old. That's always been my life. I'm very free-spirited. I feel like that was taken away from me. But then again that's probably why I was always so free-spirited even when I was young. I was able to get that out of my system at a young age. My family always resented that.

There are other things wrong with my family but I won't get into that here. I had a few friends say thety wanted to give me a kidney but I don't think they really understood what that really meant. I also had a few other friends say they contacted my cordinator but I wouldn't be surprised if they were just trying to comfort me or be nice. Because of confidentality laws I'll never know. Mostly, nobody has seriously stepped up for me.

I struggled with this for a long time. And I still do at times. But it's getting easier. We read stories about people that find their match but I think those are the lucky ones. I'm not saying it won't happen or can't, I just think there are more people like us, that don't have friends or family willing to donate, than there are the people that have it. It helps to know that there are others in the same boat. But you should never blame yourself. You are worthy.

Beachbum thank you for sharing your story. I saw a little bit of my own feelings in it and even some of Epoman's story about him and his brother....you are not alone.   

xo,
R

[kyshiag]

I too felt like the OP.  I thought people would be falling over themselves to donate to the hubby who is "such a good guy".  However, no one really has.  His best friend offered--which given his selfishness --I never even expected that.  However, the friend's family vetoed the measure.

Doesn't help that my husband wants to put on this picture of health facade and doesn't really discuss his condition or the ramification with others.  I respect his privacy but I think its stupid.  Why would anyone help someone who says they don't need help?

A friend keeps telling me to move to another country where pay to play is more acceptable.  I at least get her.  She has a son born with one kidney and she's just telling me how far she'd be willing to go.