Hypothetical Question: Getting the call when close to a living donation....

[RichardMEL]

Her's an interesting(well I thought so anyway) discussion point that some may want to comment on.

The idea came to mind after I quipped to KarenInWA, who is a bit over a week away from her living donor transplant ( ) that "What if the call came on Saturday?"

The discussion then turned to "Would you say yes to the cadaveric kidney?" - Karen, without wanting to put words in her mouth, felt she did not want to disappoint the her donor (a relative) who is excited to donate to her and would say no to the kidney. She also pointed out that that kidney should go to someone who didn't have a live donor and so that more would go off the waiting list and have the miracle of transplantation. On the other hand I am quite different (or just selfish?) - I would take the kidney - not only would I save my living donor from any potential harm, but let's face it - if/when the tx failed hopefully that donor would still be around (and hopefully have a better chance to get around the PRA issue).

So I thought it would be interesting to throw it open to IHD - what would YOU do in such a situation? Obviously this is a highly personal issue that comes down to your own personal morals and ethics - and there are no right or wrong answers. I'm interested in what the general consensus is.

So, have at it I'm interested in people's views on this one.

[MooseMom]

I would go with the living donor because

1.  the donor has already made the effort to go through all of that intensive testing, and if I took what would be statistically an inferior cadaveric kidney, then the donor may feel that her efforts, time and considerable thought were deemed useless and unappreciated,

2.  the cadaveric kidney would go to someone who did not have a living donor.  I would feel selfish in taking a kidney that could go to someone who did not have my great good fortune, and

3.  since a kidney from a living donor statistically lasts longer, that would reduce the need for a second transplant somewhere down the line.  Why use up two kidneys when one from a living donor would probably last me until the end of my life?

PS:  I am uncomfortable with the idea that I am responsible for keeping a donor from any potential harm.  That is the job of the doctors.  If the donor had a medical issue that would put her at greater risk, then I would hope that she would not be considered for donation in the first place.  I would make sure that the donor knew that if she ever wanted to pull out of this arrangement, she would certainly have the right to do so, no questions asked.  I would be certain that she was well informed, and then I would trust her judgment and treat her like an adult. 

[ToddB0130]

I believe I would also wait for the living donor transplant to occur as well.  There could be some consideration of the cadaveric transplant depending on how far into the process the living donor was and whether they felt any different about the donation process based on the other offer coming through earlier.  If they changed their mind or said they'd prefer to wait,  I would accept the offer.  But I would definitely defer to the donor and their wishes on how to proceed.

[monrein]

I'd go with the living donor for all the reasons listed above...the only thing I wonder is if I'd consult my donor.  I'm not awake enough yet this morning to know for sure.

[Poppylicious]

Can you stay on The List in Aus/US once you have a confirmed date for a living donor transplant?  I only ask because Blokey came off The List as soon as we'd confirmed the date (three months before the Big Day).  He was given the option of staying on for a few more weeks, but they wouldn't have let him remain on The List until the last minute; he had to come off it eventually so it seemed silly not to come off immediately. 

I would like to think that had he stayed on it for a bit longer and the call had come, he would have declined it, thus allowing someone else the chance that he knew he was already going to get.  Besides, from my perspective I (think I) would have felt quite irked that I'd had my decision to donate taken away from me; you go through a lot of intensive and invasive testing and questioning, and become psychologically tuned in to what's going to happen ... it would be a major blow with only a week to go! (But that might just be me.)

 

[boswife]

hum,, interesting...  As usual, 'others' answers sway me both ways but.......... When Bo was in center, there was a lady that had a living doner..( Her niece).  Two weeks before her transplant date, she was offered a cadav kidney.  She dedided to take the living one.  So, that is HER decission only, i understand that, but that was one time i felt sure of what*i* would have done.  Though i know my desire would be (for reasons listed above) to keep the living doner, I would "attempt" to spare my niece.  Ultimatly, i would feel that this would be *our* decission to make together.  Theres no way i could go ahead and take it it from her w/out her knowing there was now an option.  It's interesting to here on here of the 'doners' feeling about it.  I think donating is such a huge decission, and mabie once decided, it would feel like a sock in the gut to get turned down.  Also, if that said 'living' doner was going to donate anyway,  Heck yea i'd stick with the living one... 

[cariad]

I agree that I would consult with my donor, and I especially appreciate boswife's point that it would be wrong to just go ahead with a live donation without ever even telling the donor that you had been offered a choice. I think some people feel somewhat obligated to donate, and if they do wind up donating they would be fine with that, but would be thrilled at the option of seeing the recipient get a deceased donor first. Ultimately, it must be the recipient's decision which kidney to accept. There is a bit of agency that I refuse to ever give away. My feelings matter, and in this particular instance, they matter more than a donor's, even a really keen one.

I had this conversation with Gwyn before he was cleared to donate to me, just as I feel every person on the list with a potential live donor should do. Had I been seeking a conventional transplant and a perfect HLA match had come in from the cadaver list, I would have taken that. I did treat him as an adult, I also acted like an adult by making the best decisions I could on behalf of my children. I was the one that was going to get to face them if their father died or had to spend hours a week on dialysis because he attempted to improve my life. Honestly, the most invasive test Gwyn had before the trial got underway was a renal ultrasound, which does not even register on my invasive scale. Gwyn has a remarkable pain tolerance, so blood draws are of no consequence to him. A few other painless tests, a pointless psychological eval in which she barely asked him anything, and he was cleared.

The cadaver kidney would have achieved the same end without having to watch my husband suffer. If I could have had the type of transplant I had with a cadaver, I would have shoved my way to the front of the queue. Northwestern will do that eventually and I'll probably have a bit of regret, wishing I had waited. I had two moments during our whole ordeal where I felt we had passed a point of no return, and both were awful. The first was seeing Gwyn with the untunelled line in his neck (and his first words to me were 'you're not backing out now') and the second was of course hearing that Gwyn had made it through the operation. Both times I wanted to go back and undo it. 

I can agree with the idea that we cannot be responsible for someone else's decisions to a point, the doctors most certainly do have their responsibility. However, that does not absolve me, in my opinion, of my responsibility to him as well. Everyone should have the best interests of the donor in mind. The transplant itself was not the stroll in the park for Gwyn that so many others report it to be. If I could have had similar results without putting Gwyn and my family through that, I cannot imagine passing on that opportunity.

[Cordelia]

My husband (my potential, and I say potential donor, and I,  discussed this  very real possibility and I decided and he agreeed for me to go forward and take the cadaveric kidney, if EVER that was a situation.

But, my husband needs to lose more weight so for now, it's not a worry, I am on the LIST and am planning to go with that. He feels badly he can't help me but he would not have minded (like he wouldn't get offended) if around the same time, a cadaveric one became  availiable and wanted to take it instead.   I, too, would want to spare him from the major surgery if possible.

We think and we hope that we have thought out and discussed every possibility/scenario on the what IFS, what would we do in the event such and such happened. I think it's something not be overlooked and discussed beforehand. Just my honest opinion.

[MooseMom]

Cariad, after reading your post, I have a few questions that, on the surface and from behind a computer screen, will probably sound impertinent, and for that, I apologize in advance. 

How do you square your feeling of responsibility to Gwyn and your desire to put his best interests first with your own desire to participate in a clinical trial?  If you endeavor to put his interests first, why did you not wait for a deceased donor kidney and not involve him at all?  In the context of your desired participation in this trial, how did you define your responsibility to Gwyn?

Since you are Gwyn's spouse, do you think he therefore has some responsibility to you?  When you speak of making decisions that are the best for your children, do you think that Gwyn donating to you instead of letting you wither away on dialysis might also be a good decision for your boys?  It's true that you would have had to face your boys if anything had happened to Gwyn while he tried to improve your life, but on the other hand, what would your boys have thought of their father if Gwyn could do something to restore their mother to health but did not do it?

I certainly understand the whole idea of wanting to spare someone you love from the trauma of surgery.  My husband is far too frightened to EVER even beGIN to be tested for donation; it's just not going to happen.  So, I don't have to worry about being responsible for him in this sort of circumstance.  But I often wonder how it feels for him to know that his fear means that I am condemned to spending years on dialysis.  I often wonder if he feels any "responsibility" for me, his wife.  How will he feel as he sees my condition deteriorate?  How will he feel when he hears that I am unable to drive home from dialysis because I crashed?  How will he feel when he faces retirement alone because ESRD claimed my life?  I know what it feels like to live with crushing regret, and I feel in my bones that that is what my husband will feel in the not too distant future.  But that is something that I can do absolutely nothing about; I cannot and will not except that responsibility.  We all have to live with the consequences of our choices and our fears.

[RichardMEL]

Thank you everyone so far for the responses! Some very thought provoking and honest assessments made here - and clearly this is a situation that has more than idly crossed the minds of some as it did or me yesterday when talking to Karen!

I do feel like I am in a bit of the minority now by thinking I would take the offered kidney. As I remarked, it feels like a bit of a selfish choice to potentially make, because a) I would be taking a kidney opportunity away from someone else who maybe would not have the opportunity of a live donor and b) I would be, also potentially, "saving" my own live donor for later on if I needed it. That's the cons of that choice in my view - or the main ones (for now I'm just not going to go into the issues of how much of a match the cadaveric kidney might be, or if it's in good or bad shape etc - that sort of question adds so many unknown variables that you just can't make a rational black and white judgetment on that - unless it was, as someone noted above-Cariad?-a perfect 6/6 HLA match you'd be a fool to not take it) - but those are rarer than girlfriends in my life!!!). Anyway to me, the "pros" of that choice would have been - and for me at least this is key - to "save" my donor from the op etc. This is a different sort of selfish - and I am thinking of my own potential donor - my sister - who was denied at the last stage of testing due to a slightly elevated BP concern. Right up to that point I always had a feeling within myself that *I* would feel responsible for her should she have donated to me and something happen to her down the track that could be linked to her making that donation. That sounds like I'm ignoring her wishes to donate and to take those risks on, and her responsibility for her choices - absolutely not - it's just a feeling/concern I had within myself that *I* would always feel a sense of responsibility.

The absolutely crcial point was made above about talking with the donor about the situation (hopefully BEFORE the call comes given you don't have time to think about it when the call comes so it would be good to know how the donor might feel should that case arise) - Even as I sit here I know that  we need to respect, understand and support the wishes of people so generous in spirit and desire to help us by making the wonderful gesture to donate in the frst place - I certainly agree that just saying yes (or no for that matter) to a call without consulting with the live donor is absolutely taking them out of the loop and denying them any say.

The mroe I think about it I am happy I am glad this was never a situation I was in myself, because there are potentially so many competing emotions and demands - MM, I think, hit on this kind of thing well in her response to Cariad - how DO you balance your needs, the familys needs off against eachother - in C's case there are many arguments on either side that would make a lot of sense I think.

I really like this discussion so far. Thank you so much for everyone's input!

[MooseMom]

Richard, I can certainly understand not wanting to be held "responsible" in your own mind should something happen down the line to your living donor.  I absolutely, positively understand that, and it is that very idea that makes me pretty sanguine about not having a living donor of my own.  Worrying about the consequences of donation is something that I won't have to concern myself with, and that's a pretty big plus.  Like you've said, there are pros and cons to every choice, and sometimes it is not a bad thing to NOT have a choice!  LOL!

I don't know how you balance your own needs with those of your family.  All you can do is your best.  All you can do is to have honest, open discussions with all involved and trust the love you have for one another.  You can too easily turn yourself into a mental pretzel while doing too much navel gazing.  Sometimes you just have to have a little faith that everyone is working toward the same goal...living together happily for as long as possible.

[cariad]

Need to keep this short - just had a reply typed up and my browser threw a massive wobbly. 

OK, well, don't really have the time at the moment to write everything over, but just wanted to say to MM that those are perfectly fair questions and no need for apologies.

Maybe I'll think on these issues a bit longer while I'm working up the energy to write another response.

[RichardMEL]

I'm totally with you MM!!! This sounds bad I know, but when my sister was knocked back at the last hurdle - it literally was the last group meeting of all the nephs and tx team to decide and they erred on the side of caution and said no - my poor sister was heartbroken... what did I feel? I swear... I felt *relief* ! I know that sounds crazy, but that's absolutely what I felt. I felt well.. that choice is taken from me.

Of course just writing this I now realise that I actually came much closer to this hyperthetical situation than I realised!! I forgot, of course, that my brother had been worked up for potential ABO incompatable transplant - a process that seemed to take forever for reasons that were both in our control (my brother disappeared to India a few times!) and out of ours (the docs took forever at some points - and I tend to think that they did so somewhat on purpose almost hoping I'd get the call first! I can't of course prove that it's just a funny feeling I had). Anyway at the point I DID get the call, my brother had cleared all the basic tests and was being referred to the hospital/team that do the ABO incompat transplants (they did Wattle amongst others!) and so that donation was potentially another few months down the track - so I again was starting to have those same concerns within myself - that feeling of responsibility.

And you know what, I didn't talk to my brother about that.

I think I will call him tonight and ask him how he felt when it happened given his own desire to donate. I never considered this until just now, because I think the whole process had taken nearly 2 years at that point, so it was all so kind of remote and neverending it never seemed like it would actually happen.

Wow - thanks people - I really feel like I need to get onto this and at least talk to my brother about his feelings and ackowledge that I did not even give him a say in the matter - and I feel bad about that now.

[MooseMom]

What's most important is the fact that I am now a "Member For Life" as I seem to have passed the 5000 post mark.  I've just noticed this...   I DO bang on quite a lot!

[MooseMom]

Richard, no, it doesn't sound bad that you were glad that your sister was unable to donate; that sounds pretty human to me.  It is often a very weighty thing to have to make such decisions, and if the power to make such a decision is taken away from you, it CAN be a sweet relief!

I'd be very interested in what you have to say to your brother and how he responds, if you care to share it with us!  I know it is a personal conversation, so I'll just say that I hope you both end up satisfied with the way things have worked out.

[cariad]

I've not had loads of time to think on this, but I'll give a response similar to what I had written up before.

How do you square your feeling of responsibility to Gwyn and your desire to put his best interests first with your own desire to participate in a clinical trial?  If you endeavor to put his interests first, why did you not wait for a deceased donor kidney and not involve him at all?  In the context of your desired participation in this trial, how did you define your responsibility to Gwyn?

Gwyn and I only realised as the trial was near completion just how far over our heads we were. We joke about it now, but in all seriousness, the transplant was on a Thursday and we thought Gwyn would be back in Milwaukee by Saturday and driving the kids to school Monday morning. I guess believing that you both are invincible and being a bit of an idiot really helps. I don't know that we would have done anything differently had we known the agony that awaited us, but there would have been loads more anxiety. I almost feel like I shouldn't be so honest with potential trial participants because not knowing was what allowed us to charge ahead and not look back. The other participant with whom I spoke did not seem to have anywhere near as rough a time as I did. She was back at work within, I don't know, but I want to say weeks? That would have literally been impossible for me, no question.

For me, I thought the best thing I could do for Gwyn, and we could both do for the kids, was to find a way to put the kidney issue behind us permanently. It was sapping our emotional energy, eating away at our financial stability, and came close to killing me before I had even begun dialysis. Liot's first words to me after the transplant were Are you better now, Mommy?  I replied to my little 3-year-old Not yet, but I will be. I think if I had had a conventional transplant and heard those words, I would have broken down completely. I could barely walk, getting out of bed was an ordeal that I dreaded, I was throwing up each morning which is pain that I am not sure how I survived.

In terms of my responsibility to Gwyn, just the standard make sure that he knows he can always back out, tell him that he doesn't have to do this. Try to prepare him using what I know medically. The neupogen shots were very much like Aranesp, so I could at least prepare him in those little ways. He (thankfully!) did not react horribly to the apheresis as I did. I was in bed for a week after, vomiting and struggling with a devastating migraine. Gwyn and I have one of those very sarcastic relationships, though, and the humor was an absolute must, so we were mostly going to avoid the big, emotional scenes. He is, at core, still British after all. The emotional episodes were there, just infrequent.

The one issue I do take with this discussion is the notion that we (Gwyn and I) have a responsibility to strangers on the wait list. I am not a utilitarian. We are talking about Gwyn, my husband, my best friend, my kids' dad. There is no way I would suggest that I should take Gwyn's kidney because that would mean someone else on the list would get the cadaver organ. That is not my concern. I refuse to entertain ideas that this is somehow selfish, if other people think it is selfish, why don't they donate organs, and if they cannot, go find people that they care about who can and pressure them. Loads of people say that they will not take a kidney from one of their children, even when the kids desperately want to donate. That is not selfish! That is caring about someone, and I do not twist that into "but you're denying them something or other that they want and what gives you the right and what about all these other people who need an organ....". No. These are our choices, we do not give up these rights just because we got terribly unlucky in the health arena. If someone is on the fence and is wrestling with these issues, then I'm happy to point out the positives for the donor, but if there's someone who wants to come forward and call me selfish for concerning myself first and foremost with Gwyn's well-being and not strangers on the list, then the gloves are off.

[MooseMom]

Cariad, that is a VERY good point...that you don't have the responsibility to a stranger on the wait list as you do to your own husband.  Yes, you are right, and no, that is not selfish.  Even if it were "selfish", who cares?  Not your problem.  You can't be responsible for everyone in the world.

As I mull over the benefits of transplantation in general, I look at my own family, though, and remember than renal disease affects everyone in the family.  We are told that an organ from a live donor is always better than an organ from a deceased donor, so it makes me wonder if, therefore, a live donor organ is more beneficial to the entire family.  So while you do not have any responsibility to waitlisted strangers, do you and Gwyn together have responsibility to your children to do what is necessary to make you as healthy as possible?  If that means Gwyn offering you a kidney and you taking it, is this not a better decision for the wellfare of your entire family?  Gwyn's sacrifice will mean that he will have a wife that is healthier for longer (or, at least, that is the intention), and your boys will have a mother who will be around for more years off a dialysis machine.  Isn't that doing what is best for your boys?

The welfare of whole families are often lost in these sorts of discussions.  I was having a discussion on another forum (not kidney related) about organ trafficking, and it was pretty clear that the discussion participants really didn't know much about the fundamentals of kidney disease and transplantation (one person said that kidney disease was caused by not drinking enough water!).  They were discussing how people could survive perfectly well on dialysis and questioned the whole concept of transplantation.  It was clear that they saw the average dialysis patient as a useless wreck who had no productive life ahead of them, and it was also clear that they never once thought of how this illness affects the families of patients.  It had not occurred to them that these patients might have children to look after and that dialysis and ESRD might be robbing them of a mom or a dad.

I think that we as parents and spouses have a duty to keep ourselves as healthy as possible so that we can be there for our families.  I was unable to be with my mom when she died because I had had to return to Chicago for a neph's appointment (I had already missed several, so this one I couldn't miss).  She died on the day of my appointment, so I didn't make it, anyway!  But you see where I am going with this.  Yes, you do have a responsibility to Gwyn, but he has a responsibility to you, too, because you are the mother of his children, and it seems to me that you both have a responsibility for doing what is necessary for you BOTH to remain the healthy and vibrant parents that you are.

I am acutely aware that I have not walked in your shoes, so with this post, I am in no way passing judgment, neither am I wedded to my opinion.  These are just thoughts that occur to me at this point in time.  Perhaps if I were in your situation, I would think very differently, but I appreciate and submit to your more experienced opinion.  I am glad you pointed out that we are not responsible to strangers.  I'm going to remember that.  Thank you!

[cariad]

As I mull over the benefits of transplantation in general, I look at my own family, though, and remember than renal disease affects everyone in the family.  We are told that an organ from a live donor is always better than an organ from a deceased donor, so it makes me wonder if, therefore, a live donor organ is more beneficial to the entire family.  So while you do not have any responsibility to waitlisted strangers, do you and Gwyn together have responsibility to your children to do what is necessary to make you as healthy as possible?  If that means Gwyn offering you a kidney and you taking it, is this not a better decision for the wellfare of your entire family?  Gwyn's sacrifice will mean that he will have a wife that is healthier for longer (or, at least, that is the intention), and your boys will have a mother who will be around for more years off a dialysis machine.  Isn't that doing what is best for your boys?

The welfare of whole families are often lost in these sorts of discussions.  I was having a discussion on another forum (not kidney related) about organ trafficking, and it was pretty clear that the discussion participants really didn't know much about the fundamentals of kidney disease and transplantation (one person said that kidney disease was caused by not drinking enough water!).  They were discussing how people could survive perfectly well on dialysis and questioned the whole concept of transplantation.  It was clear that they saw the average dialysis patient as a useless wreck who had no productive life ahead of them, and it was also clear that they never once thought of how this illness affects the families of patients.  It had not occurred to them that these patients might have children to look after and that dialysis and ESRD might be robbing them of a mom or a dad.

I think that we as parents and spouses have a duty to keep ourselves as healthy as possible so that we can be there for our families.  I was unable to be with my mom when she died because I had had to return to Chicago for a neph's appointment (I had already missed several, so this one I couldn't miss).  She died on the day of my appointment, so I didn't make it, anyway!  But you see where I am going with this.  Yes, you do have a responsibility to Gwyn, but he has a responsibility to you, too, because you are the mother of his children, and it seems to me that you both have a responsibility for doing what is necessary for you BOTH to remain the healthy and vibrant parents that you are.

I completely agree that Gwyn and I have a responsibility to one another and to our kids to find the best way forward. It was a strange situation to choose between risking both parents for the sake of the kids, or preserving one with absolute certainty and possibly seeing the other one suffer and in theory I could have died, but I doubt that would have happened. I picture myself just existing on long term dialysis. Somewhere along the way I have become ridiculously sensitive to all medical procedures, so I think it would have been misery, but for what it would have been worth, I'd have been alive. Maybe not. I hope to never find out. I think that is what people who do well on dialysis and want to wag their fingers at people who accept live donations fail to understand: some people really want to donate, they do not see it as selfish of you to accept this gift, in fact, at least in Gwyn's case, they see it as rather stubborn and bonkers of you to not accept. But that's assuming that there is not a cadaver organ on offer, leaving you with a choice. Also, as you've stated and I agree, in donating to me Gwyn was helping himself in the end, and most definitely helping his children. I am fairly certain that if Gwyn and I reversed roles, I would expect him to take my kidney and my stem cells and inject me with neupogen and watch me go on apheresis and so on. I do get a little crazy when people hold themselves up as morally superior for not accepting an organ. And perhaps they would deny it, but I think the evidence that they see themselves as far above those of us who have accepted live donors (twice!) is staggering. Words like 'selfish' or statements about happily risking donors' lives betray a blinkered and judgmental view that does not take into account all of the issues that you've just written, that there are often families involved, that losing someone you love is often more painful and far scarier than a two-hour op to remove a kidney, that people have to do the best they can in their own situation, not someone else's. (I swear, one day soon this will be an outpatient procedure. Gwyn was barely in hospital 24 hours!)

I completely agree that with spouses there is a different level of commitment, so while Gwyn did not have to donate to me, in my mind he kind of did. My GP would tease me about this, when I would say "He doesn't have to do this" he would quip "Yes he does! You've got him trapped!" Perhaps that is why I seriously don't know what to do with that husband of yours, MM. I would have been enraged at Gwyn. How do you keep from feeling bitter?

I also do wonder if you would allow your son to get tested? Would he be an automatic disqualification for autism? Your son does seem perfectly capable of understanding the issues involved, and if he wanted to do it, is that something you would consider? I know my one son could not be a donor, but the other, if his father or I needed a kidney down the line and he wanted to, well, I'd probably be OK with that. Not that I love him any less, more that he is one of the strongest personalities I've ever met, he has the stupidly high pain threshold of his father, and I could picture him wearing us down until we let him do it. I'd probably want to wait until he had matured, but who knows how mature he will be at 18 or 20 or whatever.

I wonder why your husband does not even see his own responsibility to you to take care of himself. You've said that he's worried that they will find something - if they do, not only is he off the hook so to speak but it might mean they prevent a disaster. Is he not worried that he will become incapacitated or even die himself, leaving you to face dialysis on your own? You are so proactive with your health, I see his demise as the far greater risk in this situation.

For me, my question was not live donor or cadaver, it was trial or no trial. Only Harvard is doing a tolerance trial with cadaver organs, and that's been suspended, and it has to be one's first transplant, and they had already told me to go away after my (laughable) sensitization issue. So, knowing I wanted to do the trial was helpful in that it did rather take the choice out of my hands. Also, if Gwyn ever needs a liver transplant (not going to happen, but we are delving into hypotheticals) I don't care what I have to do to prove myself or what the surgeon's objections might be, I will be donating my liver to him and that wonderfully talented doctor from Northwestern will be performing the operation for us. End of!

[boswife]

we have some beautifuly well spoken people here.  Thank you 

[MooseMom]

I do get a little crazy when people hold themselves up as morally superior for not accepting an organ. And perhaps they would deny it, but I think the evidence that they see themselves as far above those of us who have accepted live donors (twice!) is staggering. Words like 'selfish' or statements about happily risking donors' lives betray a blinkered and judgmental view that does not take into account all of the issues that you've just written, that there are often families involved, that losing someone you love is often more painful and far scarier than a two-hour op to remove a kidney, that people have to do the best they can in their own situation, not someone else's.

I agree with this entirely.

Perhaps that is why I seriously don't know what to do with that husband of yours, MM. I would have been enraged at Gwyn. How do you keep from feeling bitter?

I don't always succeed in not feeling bitter.  I understand the fear that comes from thinking, "What if they find something bad?"  I have felt that fear every three months for seven years now.  But understanding it doesn't mean I have to "respect" it.  It doesn't mean I have to admire it, and I do feel that while I have never let my fear keep me from doing what I've needed to do, he is able to put his fear to the side because to him, it is still all theoretical.  He does not see a sick wife.  He does not see me on a machine, and I am curious to see how he will react once he sees me really decline.  I have dropped more hints about my true feelings than you can imagine, and I know he "gets it", but his fear is too strong.  His mother and his grandfather both have/had type II diabetes, and we both secretly suspect he is going down that path, too.  But he is one of those people who lives in denial.  If he doesn't think about it, then it doesn't exist. 

I know it does eat at him to some degree because he is extremely solicitious to the point that I feel sorry for him.  If I express the slightest desire for something, it materializes.  I have to be careful in what I say!  I know he feels guilty.  I can feel that guilt oozing from him, but I have no wish to punish him.  But sometimes I don't know how he lives with himself.  He is ABO incompatible, and the paired exchange donor program at Rush is in its infancy, and frankly, I don't think he would qualify.  If I thought he was 100% healthy and could easily donate, I think I'd be a lot more bitter.  But oddly enough, I think I'm in better shape than him despite my CKD.  I don't know how long THAT will last, though!  I have learned one thing about myself, and that is that I admire personal courage; I wish I had more of it.  I admire the courage it takes to not allow your fear to render you inert.  I know that fear can paralyze you, but if you can fight through that, my admiration for you skyrockets.  So, I think that is what bothers me most.  It's not so much bitterness than it is disappointment.  But on the other hand, he compensates for this by being very supportive in other ways, so I appreciate what he CAN give me.  Perhaps I can afford to be more emotionally generous at this stage because I am not yet on dialysis.  Once that happens, I might well have to fight much harder to prevent any bitterness from clouding my machine-supported life.

I also do wonder if you would allow your son to get tested? Would he be an automatic disqualification for autism? Your son does seem perfectly capable of understanding the issues involved, and if he wanted to do it, is that something you would consider?

I don't know if he would be automatically disqualified.  I know he does understand the situation, and he does worry about me.  But one, he is in the UK, and logistically it might be difficult.  Two, I think if that was an option, either he or my ex-husband would have mentioned it by now.  I have sneakily asked if he would give a kidney to his hypothetical wife if she needed it.  He replied, "I'd want to marry someone who was healthy."  I told him that what if she had been healthy when they married and then got sick?  Would he give her a kidney?  He had to think about that and is STILL thinking about it, I guess.  So, he didn't extrapolate and ask himself if he could give a kidney to his mother.  My son isn't very good at thinking outside the box, and I don't feel comfortable in asking him straight out, and I suspect that my ex husband would not be pleased.  Like I said, if there was anyone out there who wanted to help me, they would have by now.

I don't think it is absurd to believe that if my husband were to get fit enough to donate, and if we were able to get a paired exchange in the works, so much time probably would have passed that there may be a good chance I will have already been transplanted with a cadaveric kidney.  That's what I am choosing to believe in order to save my sanity!

I wonder why your husband does not even see his own responsibility to you to take care of himself. You've said that he's worried that they will find something - if they do, not only is he off the hook so to speak but it might mean they prevent a disaster. Is he not worried that he will become incapacitated or even die himself, leaving you to face dialysis on your own? You are so proactive with your health, I see his demise as the far greater risk in this situation.

I wholeheartedly agree, and I have dragged out my soapbox on way too many occasions and have proclaimed how selfish it would be of me if I skipped my meds, missed my appointments and dogged the diet.  I chirp on about how I am exercising personal responsibility AND wifely responsibility in doing these things because I do not want to be a burden to him because I couldn't be arsed to take care of myself.  I do this in hopes that he will not be autistic and will extrapolate out to the obvious conclusion, but he gives no sign that this is happening.  But just because I can't see evidence of this doesn't mean that it's not happening.  I don't wish to be unfair to my husband.

He will not get a flu shot because "it hurts."  I tell him that if he gets the flu, he's on his own, bucko, and I mean it.  I will not help him deal with self-inflicted maladies.  I have told him that he needs to be careful because if he is felled by some cardiovascular event or diabetic coma, I can't be of much use to him if I am tethered to a machine.  I try to impress upon him how much easier both of our lives would be if I could have a live donor, and I try to show him how HIS life would improve if he had a wife who wasn't scared out of her wits every damn day.  So the cards are all laid out in front of him.  I can suggest, illustrate, extrapolate and imagine, but what I cannot and will not do is nag.

In defense of my husband, I really must say that he works extremely long hours in a very intense job.  He works for city government, and you know how many of those jobs are disappearing.  So he works his butt off because he knows the consequences of losing his job and losing our health insurance.  Unfortunately, his job is a sedentary one, and it means he lives a lifestyle that is not physically active in the least.  His health has suffered because of his job, but he feels he is not in the position to change.  He's at work by 8 and is rarely home before 7.  He teaches graduate law courses at least one night a week (although this term, he is teaching Saturday mornings).  So while he is not giving me a kidney, he is giving me financial security, and I value that very highly.  I would hate to have to add money worries to renal worries, so while at times I feel disappointment in his fear (especially when I am frightened myself or am not feeling well), I am truly grateful for everything else he gives me.  And for this reason, I DO worry very much about his own health.

To anyone who has actually read all of this to this point, PM me, tell me that you've read all of this blather, and for every PM I get, I will donate $10 to IHD.   This offer is good until American Thanksgiving Day.

For me, my question was not live donor or cadaver, it was trial or no trial. Only Harvard is doing a tolerance trial with cadaver organs, and that's been suspended, and it has to be one's first transplant, and they had already told me to go away after my (laughable) sensitization issue. So, knowing I wanted to do the trial was helpful in that it did rather take the choice out of my hands. Also, if Gwyn ever needs a liver transplant (not going to happen, but we are delving into hypotheticals) I don't care what I have to do to prove myself or what the surgeon's objections might be, I will be donating my liver to him and that wonderfully talented doctor from Northwestern will be performing the operation for us. End of!

I do realize that the spectre of participating in this trial skews the equation quite a bit for you.  Like Richard said above, sometimes it can be a blessing to have such decisions taken out of your hands.  The bottom line is that you, Gwyn AND your boys did something that in the long run will help a lot of people, and there is much to be said about that.  You are ALL to be commended, and I truly admire the courage you all brought to this particular table.

[cariad]

MM, I did read every word (PM to follow ) more than once because there is so much great information in your post, and it's well-said and honest. I could really feel what you were saying because it was written in this level, intelligent tone, but at the same time there was an intense, emotional quality to it. Really something else.

With regards your son (I'll take on the easier issue first) if he were not autistic, I would suspect guile in that response that he would want to marry someone healthy. That strikes me as a clever redirect. I don't know much about autism, just the reading I've done due to concerns for one of the boys, but I remember reading that a hallmark of autism is the inability to deceive. Also, there is the issue of taking all things on a literal level, so I guess I am not surprised that he has basically said he does not know what he would do and that he did not really see the hidden question there. If he did see the question and is not letting on, then I think the answer is pretty clear that he is not comfortable with the proposition of donating. Since he would probably need to be asked directly and you'd rather not do that, I would say this is completely deadlocked and not worth further energy to pursue. Just as well, for the reasons you've listed.

Which brings me to your husband. Good for you for refusing to turn into a nag, I would feel the same way. Your description of him working so hard to keep his job is a summation of what I think is wrong with employment in this country. People have to choose - do I want financial stability or do I want to have time for meaningful relationships? Gwyn is probably in about the same place as your husband, he's not exactly being showered with money, it should be enough to live on, and live comfortably, but it is not the type of salary where you would expect anyone to be willing to devote insane hours at the expense of everything else in their lives. And yet, people do expect it and sadly, people do put in those kind of hours.

It sounds to me like your husband will never be an ideal donor. Hopefully he is not diabetic, but even the family history could disqualify him. This is unsolicited advice that I am offering with caution because I certainly do not know enough about your marriage to speak with any authority: Stop the hints. Sit down, have a direct conversation in which you both look these issues in the eye. You don't wish to punish him, which is good because if you or I or anyone ever reaches the point where we want to make someone we are married to suffer, it is probably long past time for the divorce lawyers to make their entrance. However, it sounds like he is punishing himself with guilt. I don't think anyone should feel guilty for being unable to donate, unwilling is a grey area in which I would need to know the person very, very well so I could make sense of those decisions on a case by case basis.

However, and this is just this outsider's perspective, I think if you can have the Big Conversation about this, you could get out of this strange limbo that you are in together. I would think that if you can come to terms with the fact that he is not meant to be a donor, can tell him directly (and mean it, that's the hard part) that that is OK, you understand it and accept it, then you would both be able to work together toward attainable goals. What I am seeing is that he probably does not want to talk about any of it, because there is this heavy guilt over the donation issue. Address it, help him rid himself of the guilt, and then hopefully he realises that he can invest himself in learning more about dialysis and how to support you without worrying that it will trigger you to make some remark that will bring up fresh guilt. If you can honestly tell him (and this is where I would struggle mightily) that you are no longer going to say anything in the vain hope that he will take a hint or come to some epiphany about his behaviour, he may then stop avoiding the kidney failure issue in toto. Because I think it's courting disaster to not have a plan - what if I get the call, what if I really struggle on incenter dialysis, how am I going to go about using NxStage and so on. Being able to talk to your spouse about your fears, his fears, your plans and his plans would seem to be essential if you want to be able to live life as happily as possible in kidney failure.

Thanks for the lovely compliments. For me, I do not see myself as courageous, but am flattered all the same. Liot does not seem to have any memory of it  although i think there are psychological scars there that are only starting to heal. Aidan says he never had a moment sitting in class where he thought 'my parents are in surgery' so while he knew what was happening, I think the bravery for him was just going about his daily existence and not giving in to obsessive worry. He is such a worrier, too, I am so proud of that boy. Gwyn, absolutely, that was pretty damn courageous.

[MooseMom]

I don't think my son could cleverly redirect anything, ever!   I won't claim to know everything there is to know about my son because his brain is developing, changing and maturing in ways that neither of us can always see.  But it was instructive to me to see that he didn't see the "hidden question".  It was probably the only time I've ever posed a "hidden question".  The good thing about my son's autism is that I can be very direct and don't have to faff about with hidden questions in the first place.  If there is something I ask and he doesn't want to answer, it's usually because he is embarrassed (which for an autistic person, feeling embarrassed is GREAT because it is NORMAL and indicates a desire to be socially acceptable), and he will simply say, "I don't want to talk about that."  But sometimes it is ME who doesn't want to talk about something, and I don't think I could have faced a negative reply had I asked him a direct question on this particular subject.

As for my husband, I know that he is not going to be a qualified donor, so while from time to time it might bug me, on the whole I've decided not to even hope for that particular outcome.  I am not a person of great faith, but for whatever reason, I've decided that what is meant to happen (or not), will happen.  The two calls I got in Vegas...maybe the fact that I was not home to take those calls and have a chance for those kidneys was a blessing in disguise.  If my husband cannot be a donor, there are other things he CAN do.  If he is not recovering from a nephrectomy, then he will be more able to take care of my every whim and need when I get home from MY transplant.  Maybe that's the way things are meant to work out.  He has voiced unwaivering support for whichever modality of dialysis I choose, and he was the one who talked to the NxStage people and to the SW at the clinic I'll be going to.  He has spoken with the home dialysis training nurse on my behalf.  So to be fair to him, he HAS done what he can (and that has been quite a lot so far) up to this point.  Instead of focussing on what he has not done, I should focus more on the things he HAS done.

I do make it a point to thank him profusely for the support he has given me, so thank you for reminding me that this is a good way to offer absolution, if you will.  I understand your advice about sitting him down and speaking to him directly, and perhaps I will do just that, but I think I may be able to find a way to absolve him without the direct conversation.  I'm going to work toward that end.  I don't really want to have to talk about guilt and absolution; that's so painful.  I may have to resort to that, but I want to find another way first.  I DID give a little speech the other day about how maybe it is just as well that I don't have a living donor because I don't want to have the extra concern of worrying about someone else's welfare (a "hidden statement", but hopefully one that was not TOO hidden!).  To be sure, that's how I really DO feel.  If someone offered to be a live donor, I'd certainly go with it, but not having a live donor does absolve me from certain feelings of responsibility. 

I have initiated many discussions about planning for life with kidney failure.  Actually, I talked about this again last night.  I might be a lot of things, but one thing I am NOT is a patient without a plan!  My plan is to eventually do NxStage at home, and my husband is all for it.  However, I am sort of rethinking things a bit.  My clinic is a five minute drive from my house (that was not planned!), and if I could get my neph to prescribe an extra session on dialysis a week AND I could be taught how to self cannulate, maybe I should just do dialysis in-clinic after all.  I have the time; I am not employed, and I don't have young children to raise.  I could therefore sidestep the whole training process and the other bumph that comes with doing dialysis at home.  The trick would be to get more dialysis in-clinic...that's the rub.  If they won't allow me more sessions in the clinic, then I'll stick with my original plan and come home with NxStage.  But yes, I make sure that we are as prepared as possible.  I simply will not allow my husband to be completely surprised and unprepared.  That's unacceptable to me.

Thank you for taking the time to respond (I await your PM!).  I know it is not easy to offer this sort of advice in such intimate circumstances, but you have been very gentle and solicitous, not to mention brave for even attempting it.  I understand and agree with all you've written, and I am grateful.  I think I am well on my way to accepting that my husband is simply not meant to be a donor.  I admit that it tends to grate on me when I am feeling particularly unwell or frightened, but on the whole, acceptance is my responsibility.  It is also my responsibility to recognize and to be grateful for what I DO have, which is really quite a lot in the grand scheme of things.

[Lovebelle]

Richard,
I actually am of the same opinion as you. The thought of a loved one or friend risking their life to donate a Kidney to me makes me uncomfortable at times. While I know Doctors would not put anyone at unecessary risk, stuff happens. People go through routine surgeries all the time and complications can occur that are totally unforseen. If something happend to someone who selflessly donated to me when I could have taken a cadaver kidney, I would never forgive myself.

But I understand and agree that the other party needs to be involved in the process. I actually do not encourage family and friends to get tested for me. But I dont refuse those who offer either, though I have noticed most offers are pretty generic and people do not usually follow up. I know the prognosis is much better with a living donor, but I think its equally important to do what you feel good about. For me, a cadaver kidney while not optimal, is what I feel comfortable with. Maybe Im weird but just my personal preference.

[sullidog]

I'd go with the living donor

[JustDee]

I think I'd go for the Dead (can't spell cadevour) Kidney.  My husband has given up smoking, gone thru hundreds of tests and we still don't have a definite decision if he can donate (something on his kidney worries the docs)...but even if he was ruled eligible I think I would want to spare him the pain, and to be totally selfish, if he had the operation who is gonna take care of ME!!!!! Ever since Hubby volunteered to share his kidneys with me I have been a bit skeptical about how I would feel if this wonderful gift comes to fruitation.  What if's have driven me dizzy...what if his son needs a kidney, what if something goes wrong with the kidney he keeps (I don't think the powers that be would let me "return" the gift), and what if he does this and expects me to now be a Perfect Wife....OMG I can't live up to that, I'm not even a partially perfect Wife.  My husband has an online biz and I work for the IRS...and frankly that is ALL that I do.  Hubby does all the housework, all the cooking, makes all needed phones calls to whoever needs to be called, and is a totally wonderful caregiver with little nagging and Lots of Encouragement.  In truth I would be lost without him...do I risk hurting the only possible life raft...I think NOT!!!  So while time goes by, and docs continue to say "okay, one more test...just one more test"...I hope and pray that someone very very old, someone ready to go to Heaven, someone that only used his or her kidney once a week on Sunday, will go on to their reward and leave their kidney behind for me. Wouldn't that be Glorious!!!!