Is It Ever Right to Buy or Sell Human Organs?

[MooseMom]

I'm not on dialysis yet, so I apologize now for any naive questions, but if home hemo is available in the US via a system like NxStage, and if the whole idea is to be able to dialyze more frequently, then what exactly is the debate about (I know this is off topic, but I see that the conversation is veering toward one about optimal dialysis)?  If optimal dialysis is reached by dialyzing for more than 15 hours per week (I think this is what you are saying, that this is the "threshold"), then isn't that what we should aim for?  Is there some insurance obstacle in the way of achieving this goal?  Is the problem one of funding?  (I know I could go to DSEN and I have, but at the moment I'm tired and will just ask a direct question.).  This isn't the standard of care in the US already?

[Hemodoc]

I'm not on dialysis yet, so I apologize now for any naive questions, but if home hemo is available in the US via a system like NxStage, and if the whole idea is to be able to dialyze more frequently, then what exactly is the debate about (I know this is off topic, but I see that the conversation is veering toward one about optimal dialysis)?  If optimal dialysis is reached by dialyzing for more than 15 hours per week (I think this is what you are saying, that this is the "threshold"), then isn't that what we should aim for?  Is there some insurance obstacle in the way of achieving this goal?  Is the problem one of funding?  (I know I could go to DSEN and I have, but at the moment I'm tired and will just ask a direct question.).  This isn't the standard of care in the US already?

Actually, home dialysis is not available in all places and access to incenter nocturnal is even more limited.

Dori Schattell has a great map of the coverages at Home Dialysis Central.  Take a look at that to see if you are in an area that might be covered by this.  Further,  discuss with your physician what your options are.  Very few patients are offered home dialysis as a treatment option, only 12% in a 2005 study.  It is not likely that your general family physician will know anything about this and many nephrologists in America have yet to accept the home dialysis option as well.  As Bill Peckham states, your zip code determines your dialysis care in America.

http://www.homedialysis.org/locate/maps

Good luck with your search, there is much information easily found on the internet.

[Bill Peckham]

I'm not on dialysis yet, so I apologize now for any naive questions, but if home hemo is available in the US via a system like NxStage, and if the whole idea is to be able to dialyze more frequently, then what exactly is the debate about (I know this is off topic, but I see that the conversation is veering toward one about optimal dialysis)?  If optimal dialysis is reached by dialyzing for more than 15 hours per week (I think this is what you are saying, that this is the "threshold"), then isn't that what we should aim for?  Is there some insurance obstacle in the way of achieving this goal?  Is the problem one of funding?  (I know I could go to DSEN and I have, but at the moment I'm tired and will just ask a direct question.).  This isn't the standard of care in the US already?

Actually, home dialysis is not available in all places and access to incenter nocturnal is even more limited.

Dori Schattell has a great map of the coverages at Home Dialysis Central.  Take a look at that to see if you are in an area that might be covered by this.  Further,  discuss with your physician what your options are.  Very few patients are offered home dialysis as a treatment option, only 12% in a 2005 study.  It is not likely that your general family physician will know anything about this and many nephrologists in America have yet to accept the home dialysis option as well.  As Bill Peckham states, your zip code determines your dialysis care in America.

http://www.homedialysis.org/locate/maps

Good luck with your search, there is much information easily found on the internet.

It's the math.

I believe that in 2010 the home hemodialysis training capacity in the US is about 4,000 patients a year and the system is operating at about 50% capacity - I think in 2010 about 2,000 people will be trained to dialyze at home.

This year 80,000 - 100,000 people will start dialysis in the US.

[MooseMom]

I've already discussed NxStage with my neph who feels that it offers good clinical results; he knows that this is my game plan at the moment and has encouraged me to go this route.  However, he was careful to tell me that it does require commitment (not by way of discouraging me; I appreciated his candour).  Unfortunately, incenter nocturnal is not offered at his clinic, but I do intend to ask him about any plans to make this option available.  His clinic is a 5 minute drive from my house, so this is where I want to go when the time comes.  His clinic does offer NxStage training.

Bill, I'll be one of the 2000 if at all possible.

[Meinuk]

Meinuk, you ask a lot of pertinent questions to which I'd love to hear the answers, but I am skeptical.  Usually when a solution just makes sense, it gets lost somewhere along the way.  And there is nothing wrong with making this personal.  It really doesn't get much more personal than this.

I am curious, what are you skeptical of?

As far as my trying not to be personal, from my POV, your anger is part of the process - I can easily say that I fully understand anger - I am second generation CKD just like you. Anger can either cripple us or launch us into action. Finally, I am in the launching phase - but it took a long time and there is plenty of residual bile just waiting to spew. I am also aware of my hair trigger, and I try not to use my words to provoke (unless you are the Salt Institute, Sally Satel or Stauffenberg... ok, I'll add DaVita to that list too) - this is why I try to choose my words carefully when I am writing my response to what I perceive to be a possibly volatile conversation (you can go back and read my words on this subject in other posts - people can get mean and defensive)

On-line posts do not have any of the nuance of face to face conversation and after a few years on being in the on-line environment, I try to be cognizant of that.  Lashing out in an on-line peer support group is not only healthy, it is expected.  (That is why we have RANT emoticons). But I don't want to add fuel to the fire. Being in kidney failure leaves us at our most vulnerable, and any affront (or seeming affront) can simply be magnified by the totality of the disease.

I am currently reading Bright Sided: How Positive Thinking is Undermining America http://www.barbaraehrenreich.com/brightsided.htm - in the beginning of the book, it she chronicles her experience with on-line breast cancer support groups. I see a slight corrolary with the CKD community - I may even review the book here on IHD once I finish it. I'm just not sure yet.

MM all I can really say is that I feel your pain and frustration. When the time came for me to start planning for dialysis in earnest, privately, my family and I discussed a trip to Brazil to buy a kidney (a lot of planning and research was done for me without my knowledge), we discussed friend/family donors - kidneys were offered - but I didn't want their kidneys while they were still using them. Rather than deal with the family pressure, I walked and took the CKD journey alone, survived in center dialysis, survived (and thrived) on Nx-Stage alone at home.  There was no one I could call if I was cold, or if I needed something - and I didn't want anyone there seeing me at my most vulnerable. I relied on myself, I ranted to the only on-line support group that would have me, and I lived my life.  Was it pride or stubbornness? Yes, both.  Do I have control issues?  Yes.  Would I do it the same way a second time knowing now what I do? Yeah, I would. 

At the same time, people here on the boards were traveling their own journeys.  I think of Silverhead, who as I type this is saying goodbye to his partner and wife.  Dialysis brought their relationship to a new depth of understanding and their partnership and love resonates with every post I read.  I wish my journey had been like theirs.  I hope that my death will be like Sharon's, surrounded by the people I love when that time should come.

My point is, our disease and treatment will be what we make of it.  I made mine an inconvenience - one to be dealt with and then move on.  Tom & his wife's journey to me reads like a love story with a humming NxStage machine in the soundtrack of the final chapters.

How's that for personal? I'll stop now, because I am way way off topic.  (result of too much coffee... I am now going to go and count fish in the stream...)

[MooseMom]

Meinuk, once again I have been artless and unfathomable.  All I can say in my defense is that apart from dying kidneys, there are extraordinary things going on in my life that have all converged to make my world very dark and murky.  I suppose a consequence of this is a hopefully temporary inability to make myself clear.

I saw the author of "Bright Sided" on The Colbert Report, and I was overjoyed that she wrote such a book.  I'd love to read your review should you write one.

I am not skeptical of any of your proposals, rather, I am skeptical of this nation's ability to implement them.  I feel like we have ground to a halt.  The political atmosphere, in my very humble opinion, does not seem conducive to implementing anything with a modicum of common sense.  I would like to know why we have NOT found answers to the questions you've posed.

And when I said that there is nothing wrong with making this personal, I was trying to make you feel comfortable with posting "personal".  I didn't mean that I was wanting to indulge in personal attacks (is that how you interpret "making it personal"?)  because I don't see the need in attacking anyone.  I just meant that when it comes down to discussing survival and suffering and wanting to avoid said suffering, well, those are very personal feelings.  I always welcome anyone's postings about their rage or fear because I think it takes some courage to get "personal", and I want people to feel safe to vent those feelings.  I don't want anyone to have to justify or defend their feelings.  That's what I mean when I say that there's nothing wrong with making it personal.  At the same itme, I was not challenging you to post your deepest feelings if you did not want to.  There is no obligation to reveal anything. 

I like the idea of seeing dialysis as an "inconvenience."  That's what I will strive for.  Thank you for that!

OK, I think the time has come for me to stop posting on IHD for a while because despite my best intentions, I seem to be confusing everyone, entirely my own faul tbecause I am just not in a good place right now.  IHD used to be a safe place for me, but I don't feel that way any longer, so to all of you, my very best wishes.  I'll be back at some point in the future, but now is obviously just not the right time.  I love you all and I'm still angry that any of you are suffering.    (But I'd still like to participate in the Secret Pal fun!)

[MooseMom]

PS  I am horrified by the notion that at anytime, anyone thought I was making a personal affront.  That just makes me sick to my stomach.  I can't take that.  That is so opposed to what I've been trying to say.  I'm thoroughly devastated, I really am. 

[Meinuk]

MM  - first off, you do need to take a step back, but not because you have been offensive to anyone (in my eyes, you haven't been) but because you need to take care of yourself.

As far as being skeptical - thank you for clearing that up.  I was wondering.

As to personally:  When I wrote "this is why I try to choose my words carefully when I am writing my response to what I perceive to be a possibly volatile conversation"  - well, didn't THAT just backfire?!? Since you joined the boards, I have felt a kinship with you. Family in England, etc. I read your posts and imagine what I was feeling/experiencing during my stage of the journey.  Like when you got your fistula, or when you needed to take care of your mother.

I've gotten into plenty of acid worded debates over Sally Satel and the Organ Market.  I simply didn't want you to feel targeted.  oops. 

What I did do was try to show you my scars using words.  And to show you that there is life after CKD5, and that we are all going through this too.  The intellectualizing, the searching, the anger and the depression.

Keep writing, because that is how we share here at IHD.  But don't beat yourself up over how or what you are feeling. These are valid questions and feelings, and many (if not all) of us have had them.  (well, maybe not Sally Satel).

I am sorry if there is misunderstanding - that was the opposite of what I was trying to do.

[Bill Peckham]

MM we all need to take breaks and step away from the computer every now and then but this has been as thoughtful a discussion as I've seen on the topic.

[Hemodoc]

Meinuk, once again I have been artless and unfathomable.  All I can say in my defense is that apart from dying kidneys, there are extraordinary things going on in my life that have all converged to make my world very dark and murky.  I suppose a consequence of this is a hopefully temporary inability to make myself clear.

I saw the author of "Bright Sided" on The Colbert Report, and I was overjoyed that she wrote such a book.  I'd love to read your review should you write one.

I am not skeptical of any of your proposals, rather, I am skeptical of this nation's ability to implement them.  I feel like we have ground to a halt.  The political atmosphere, in my very humble opinion, does not seem conducive to implementing anything with a modicum of common sense.  I would like to know why we have NOT found answers to the questions you've posed.

And when I said that there is nothing wrong with making this personal, I was trying to make you feel comfortable with posting "personal".  I didn't mean that I was wanting to indulge in personal attacks (is that how you interpret "making it personal"?)  because I don't see the need in attacking anyone.  I just meant that when it comes down to discussing survival and suffering and wanting to avoid said suffering, well, those are very personal feelings.  I always welcome anyone's postings about their rage or fear because I think it takes some courage to get "personal", and I want people to feel safe to vent those feelings.  I don't want anyone to have to justify or defend their feelings.  That's what I mean when I say that there's nothing wrong with making it personal.  At the same itme, I was not challenging you to post your deepest feelings if you did not want to.  There is no obligation to reveal anything. 

I like the idea of seeing dialysis as an "inconvenience."  That's what I will strive for.  Thank you for that!

OK, I think the time has come for me to stop posting on IHD for a while because despite my best intentions, I seem to be confusing everyone, entirely my own faul tbecause I am just not in a good place right now.  IHD used to be a safe place for me, but I don't feel that way any longer, so to all of you, my very best wishes.  I'll be back at some point in the future, but now is obviously just not the right time.  I love you all and I'm still angry that any of you are suffering.    (But I'd still like to participate in the Secret Pal fun!)

Dear Moosemom,  actually Bill might jump in on this, but it is my understanding that we don't need politics so much as to overcome the stumbling blocks of CMS.  We already have the political mandate, it is now simply putting good medicine into practice.  I am becoming more optimistic all the time that we shall soon see optimal dialysis as the standard of care.  Once implemented, we will look back at all the lives and money saved and wonder why we didn't do this 40 years ago.  Well actually, we did do it 40 years ago and then stopped.  I believe that there is great reason for real optimism.

[Hemodoc]

MM we all need to take breaks and step away from the computer every now and then but this has been as thoughtful a discussion as I've seen on the topic.

That is true on all accounts.  I haven't written much on DSEN for the last 3 or 4 months, but I believe we are heading into a fall and winter season of some break through reports and studies that will see the realization of what we have been hoping for a long time.  Sometimes a break is what is needed to get going again.

Cheers,

[FineWhine]

How about working for state laws that allow organ donation automatically on driver's licenses?   

Instead of having to opt for it, how about if people have to opt out? I don't mean to be sneaky about it, but most people never think about it.

Would there be too much of an uproar? Has any state done something like this?

Personally, if there were strict ethical guidelines, I bet there would be a lot of people who would consider it if they could get more than reimbursed. Maybe a blind pool of donees, so it's not the rich who get first dibs? (as if they couldn't get what they wanted and only coincidentally donate a wing to the donating hospital)

[cariad]

She wrote a book called When Altruism Isn't Enough followed by an essay called When Altruism Isn't Moral.  Bill, Anna and I have written literally dozens of posts based on her writings voicing our opposition to her views.  The irony is that her renal transplant came from an acquaintance, not a close friend so she really is the poster child of Altruism.  If you read her writing, my impression is she wishes she could have just paid for a kidney to avoid what she calls the "tyranny of the gift."  She is a psychiatrist by trade so she may be sitting in the ivory towers thinking about issues so much she has lost sight of what is really going on.  It is a very bizarre response in my opinion to an ultimate sacrifice from a person who was essentially a stranger to her.  Go figure.

This is all news to me about Sally Satel, but whoa! Such telling info. I am frankly not surprised, or rather am surprised that someone would openly admit things that most intelligent people would leave us to just assume about them.

The Tyranny of the Gift, eh? Yes, it is an art to accept such a gift gracefully, and obviously one Satel has not mastered. She seems to expect the entire country to change its laws to make her more emotionally comfortable with her situation. What a very sad person indeed. I hate to sound like a broken record, but anthropology has a history of studying this very response. Countries often end up resenting other countries that give them aid. No one wants to feel like a charity case and so they end up resenting the person/people who make them feel this way. Poor Sally Satel has to accept a vital organ from someone (I assume there was a gun to her head when the offer was made) and now she feels indebted to them and wants to just be able to pay this person off rather than, I don't know, thank them?! Tell others how this person made it possible for her to get off dialysis? I wonder how her donor feels about this? It is truly a bizarre response. If I were considering live donation, I certainly would rather have the sincere thanks from the donor and a continued good relationship with them than a token sum of cash. True, I live far off the poverty line, but it is not like anyone will get enough money to be set for life. A Nephrology journal article put fair payment for a kidney at $40,000. That seems like a laughable sum for such a priceless gift. Really, any sum seems laughable to me, and that is rather the point.

I personally have experienced none of the emotional turmoil that she apparently has post-transplant. I love telling people about my hero husband. It's only been six months, and honestly it rarely comes up anymore, but anytime I get the chance to embarrass him by lavishly praising his selfless bravery, I run with it. And this was no ordinary donation, as most of you know, he went through some terrifying and painful procedures to give me the transplant of my dreams, one that will eventually lead to me saying goodbye and good riddance to 35 years of immunosuppression.

Thank you, Gwyn, and if I had $40,000 to spare, I would gladly give that to you, too, and still not ever consider us even.