Friday, January 20, 2012

Prolonged, But Not Saved

I don't know if any of you out there frequent or even glance at the online news source known as The Huffington Post. It's not my sole or even favorite place to go for news, personally, but I do follow it on Twitter (you can find me over there at @piperbeatty, by the way) and I even drop by the website every so often. And last night, as I was waging yet another (unsuccessful) battle for sleep against the twin terrors of prednisone and prograf, I noticed the following article:

Girl With Disability Allegedly Denied Kidney Transplant

Okay, let me just start out by saying that I have done exactly zero outside research on this particular story. I am not, in any way, shape, or form, posting the above link as a statement of fact or as a condemnation of CHOP (the hospital referenced in the article). I don't have any rights to this story and I don't make any representations as to the article or its content. Everyone straight on those facts? Okay, cool.

All disclaimers aside, what I did do is read the article. And while I was doing so, I found the following statement, attributed to a pediatrician and geneticist, that the young subject of the article should probably

"...use a 'living designated donor' who would understand that 'Amelia's life would be prolonged, but not saved, by the transplant.'"

And that, guys, is where I had to stop reading, look around, and then read the whole piece again from the beginning. Because, quite honestly, I was baffled.

What, exactly, is the difference between "prolonging" a life and "saving" it? I mean, heck, we all die eventually, right? If I throw myself in front of a speeding bullet headed straight toward an innocent child, I haven't really saved that child in the sense that she will never die, have I? What I've really done, really and truly, is prevented the child from dying that day, that minute, that instant, and from that bullet. Assuming that my attempt is successful (I don't know that when I make the decision to leap, after all), then the child will still die somewhere down the road, though I think we can all agree that it would hopefully be a long way down the road and not just around the next bend. But even if it is sooner rather than later, my act of jumping in front of the bullet is still considered "saving her life", right? I mean, if the kid dies in 6 years, no one is going to look back at my action and shake their heads sadly, muttering "well, that's a darn shame. She only prolonged little Suzie's life, when she thought she was saving it!"

On some level, I read the doctor's attributed statement as reasonable, I guess. It seems to be saying that the donor should know in advance that the kidney transplant will not cure the child's disease or other disability -- that she will likely still suffer complications down the road and possibly reject the kidney or damage it, or maybe die of other causes. And I get that, seriously. As someone who was blessed to receive new organs, I know the sad truth that these suckers are scarce (sidenote: go here and sign up if you agree with me and want to fix that!). I understand that not everyone can receive new organs and that doctors have to make extremely hard calls about who can and cannot be placed on the transplant list. All of that makes sense to me, even if it does sometimes strike me as incredibly sad.

But as to informing donors that their gifts are "prolonging" rather than "saving" lives? Well, that, to me, is where things get murky. I'm 100% for information and informed consent, but I also don't know how or why that information is really valid. What sounds more reasonable (and maybe this is more along the lines of what the doctor had in mind in the first place) is to tell donors and recipients alike that transplant is not always (or maybe ever) a total cure. Transplant comes with risks, it comes with side effects, and sometimes it comes with unexpected results. What it never comes with, unfortunately, are guarantees. And as someone with a disease that was not cured by my transplant (I still have CF in my other organs and in my sinuses), I also take it as somewhat of a given that transplant does not have to be perfect to still be a wonderful, joyous, and very much worth it miracle. I have no doubt whatsoever that the doctor quoted in this article would agree with me on that as well.

What scares me is the idea that potential donors out there might think their gift is any less valuable if it simply "prolongs" a life rather than "saves" it. That scares me because I have spoken to transplant patients who have told me that "even just having one deep breath with these new lungs would have been a miracle big enough to make everything worth it." It scares me because I know myself, as a patient, how valuable an organ is to anyone who is lucky enough to receive it, and also to their family and friends. It scares me because the real value of a life is not measured by the number of days it continues, but by the passion and the strength and the goodness with which it unfolds, even if that unfolding ends far too soon. It scares me because some of my favorite stories are short ones, and I want to make sure that those stories are cherished just as much as the longest novel.

Most of all, though, it scares me because it ignores the fact that all donors, all gifts, and all recipients are, at the end of the day, equal. The beauty of organ donation for me lies in the personal connection it represents: one soul reaching across the void or the fear to offer another soul a second chance, because we are, after all, made up of the same stuff. And the best thing about second chances is that they are always a testament to faith and spirit -- even if they don't always last forever.

So probably it is true, after all, that most transplants are more of a "life prolonging" surgery than a "life saving" one. But maybe the deeper truth is that if we could all be so lucky as to prolong the life of another, then we just might end up saving our own.


  1. Beautiful as always. You've made me think because I some times think of life prolonging as a negative I when someone says they don't want life support to prolong their life. I guess I've always thought of it as meaning helping someone when there is no hope, but giving a child a new kidney doesn't sound like that at all! I too have new lungs and I know they won't last forever. If I died tomorrow (I've had my transplant for 6 years and 4 then I would still consider my donor to have saved my life. I've lived more in the past 6 years then in the whole 23 of them I had before that!

    Hugs and thanks...Lindsey

  2. But what is life? Isn't life itself being and doing things? Isn't it having family and friends and being happy? So I think that organ donation does in fact SAVE lives. Because most people prior to transplant lose their lives, or what they considered to be their lives.

    I read this article too and I never went to CHOP, but I did go to HUP and it scares me that some doctors won't give this child a chance to have her own life only because she is mentally retarded. No she may never fully grasp that someone out there saved her life by providing a kidney for her. But she has family and friends who deserve to get to watch her grow up, even if only physically.

    It sucks that it has come down to such a lack of donors that we have to pick and chose based on mentality. I wish we could give organs to all those who deserve it, not just the ones who are more aware of their surroundings and lives.

  3. I read this article because someone had posted it on their facebook and I thought the same thing as you. While the decision they made was a sad one due to the fact she is a little girl. The same thing happened to my grandpa, he needed a new kidney because he had been on dialysis for awhile and he was denied transplant because he had the beginning stages of Alzheimers disease and while my grandma was still alive she wasn't gonna last forever and if she passed away before grandpa how would he remember his anti-rejection meds? While my family was very sad by this news and he did eventually pass away like you said they have to draw the line somewhere cause there just isnt enough organs to go around....