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(Think Progress)   15 year old denied heart transplant in Georgia now at top of the list, nothing to do with national media attention   (thinkprogress.org) divider line 219
    More: Followup, heart transplants, Southern Christian Leadership Conference, Children's Healthcare of Atlanta  
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6119 clicks; posted to Main » on 14 Aug 2013 at 6:12 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2013-08-14 05:30:19 PM
The guy who is now second in line is thrilled about it.  Oh, wait -- now he's dead.
 
2013-08-14 05:37:52 PM
I do wonder what the difference would have been if he had been a white kid who has a problem doing what he's told and engages routinely in self-destructive behavior.
 
2013-08-14 06:13:24 PM
riiiiiiiight
 
2013-08-14 06:13:43 PM
Transplant rank by media whore is a fail-proof system.
 
2013-08-14 06:14:37 PM
Sorry, kids who followed the rules.
 
2013-08-14 06:14:44 PM
his history of "non-compliance"

Is that what we're calling being black now?
 
2013-08-14 06:14:56 PM
I wonder what sort of tragic post-transplant followup story we'll be hearing.
 
2013-08-14 06:16:50 PM
I thought we had a magical technology of some kind to make organs now?
 
2013-08-14 06:17:00 PM
Soooo, he jumped ahead of all the other qualified recipients???
 
2013-08-14 06:17:03 PM
Wasn't this the kid who won't take his heart meds and won't go to doctors appointments?
 
2013-08-14 06:18:00 PM
I hope we don't see him on fark again in a few months.
 
2013-08-14 06:18:43 PM
Lawsuit time for the new number two on the list!

Then he/she can buy a new heart over in India,  thats what they have all those extra kids for anyway,  spare parts!


/heh,  #2
 
2013-08-14 06:18:45 PM

Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?


some kind of printing process perhaps?
 
2013-08-14 06:19:01 PM

Raharu: I hope we don't see him on fark again in a few months.


I hope we do so this bullshiat doesn't happen again.
 
2013-08-14 06:21:47 PM

h2ogate: The guy who is now second in line is thrilled about it.  Oh, wait -- now he's dead.


This.

WTF Indeed: Transplant rank by media whore is a fail-proof system.


This.

The Muthaship: Sorry, kids who followed the rules.


This.

iheartscotch: Soooo, he jumped ahead of all the other qualified recipients???


And this.
 
2013-08-14 06:21:56 PM

Benevolent Misanthrope: I do wonder what the difference would have been if he had been a white kid who has a problem doing what he's told and engages routinely in self-destructive behavior.


You mean like the pretty white girl who got two pairs of adult lungs despite not qualifying due to her age back in june of this year?
 
2013-08-14 06:22:24 PM

Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?


From what I understand, we can grow the tissue, but I don't think we're able to make it grow in the right shape yet. Like how that lab-grown beef patty just didn't look right. That's fine if you're eating it, but not so fine if it's in charge of pumping your blood.
 
2013-08-14 06:22:37 PM

megarian: Wasn't this the kid who won't take his heart meds and won't go to doctors appointments?


Yup.
 
2013-08-14 06:23:04 PM
www.luxuryplastic.com
Hold up, let me show you how to get to #1 on the donor list.
 
2013-08-14 06:23:45 PM
This story has just... ugh. EVERY transplant patient is assessed for their willingness and ability to manage their condition, to comply with all doctor's orders and to deal with the massive life changes that accompany a transplant.

There's an excellent chance that this kid was assessed as non-compliant initially... and the family understandably freaked out about it instead of working with his team to figure out how to get him prepared. The fact that he's now on the list probably means that he got scared enough for his life to listen to his doctors and to figure out what it was going to take to get on the list.

I really hate the fact that the transplant team at a major hospital following UNOS regulations got painted as racist and insensitive with no corroborating evidence.
 
2013-08-14 06:23:54 PM

Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?


Whatever happened to using pig organs?  Theyre plentiful and afterwards you can cook up some bacon and use it for anti-rejection medication.
 
2013-08-14 06:23:57 PM
But at the beginning of this week, the doctors at the Children's Healthcare of Atlanta informed his family that he wasn't eligible for the transplant list, partly because of his history of low grades and trouble with the law. Doctors weren't convinced that Anthony could be trusted


Duh, he is a blah person.
 
2013-08-14 06:24:00 PM
Second place is the first loser.
 
2013-08-14 06:24:34 PM

Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?


What fantasy land do you live in?
 
2013-08-14 06:24:46 PM
When he's shot though this replacement heart, who will be to blame? Kid you give people waiting for a transplant a bad name.
 
2013-08-14 06:24:53 PM

maltedmothball: Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?

some kind of printing process perhaps?


Yes, a kind of process that can do everything and anything at all no matter what, but is somehow never there when it's needed.
 
2013-08-14 06:25:29 PM

Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?


That sounds cool. Got a link?
 
2013-08-14 06:26:29 PM
Where's Oprah to comment on this subject? The race card hasn't quite been played out this week. Can't wait for this kid to blow his second chance at life.
 
2013-08-14 06:26:39 PM

megarian: Wasn't this the kid who won't take his heart meds and won't go to doctors appointments?


My uncle has had his "new" kidneys for about 30 years now,  he doesnt take his anti rejection pills and hes still doing alright with them.  Shows what the doctors know!

/Probably a lot more than my uncle, but still.
 
2013-08-14 06:27:53 PM

Chinchillazilla: From what I understand, we can grow the tissue, but I don't think we're able to make it grow in the right shape yet. Like how that lab-grown beef patty just didn't look right. That's fine if you're eating it, but not so fine if it's in charge of pumping your blood.


upload.wikimedia.org

Ten years ago we just put a sculpted ear-shaped scaffold into a genetically engineered mouse to grow the cells on the scaffold. But these people are luddites, No one cares about the mouse or the cells, it's how the scaffold was made 5 minutes faster that's the key.

ArcadianRefugee: Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?

What fantasy land do you live in?


Computers got better and a scientist was wrong once. Therefore, anything is possible.
 
2013-08-14 06:29:40 PM
As a relative of someone who is on an organ waiting list, this makes me more than a little grouchy.

Here's hoping that when this kid dies, he's signed his organ donor card.
 
2013-08-14 06:30:21 PM

rustypouch: Quantum Apostrophe: I thought we had a magical technology of some kind to make organs now?

That sounds cool. Got a link?



I do actually.

Link


Breakthrough: Scientists have built a fully-functional mouse heart
In a major scientific first, a team of developmental biologists has built a functional mouse heart from human tissues. The results herald a future where specific patches of heart muscle - or even the whole organ - could be grown for transplantation.
 
2013-08-14 06:32:15 PM

SordidEuphemism: As a relative of someone who is on an organ waiting list, this makes me more than a little grouchy.

Here's hoping that when this kid dies, he's signed his organ donor card.


Spend some time actually researching how the organ transplant waiting list works and how the matching is done. He's not at the top of the list because he jumped ahead of other people who need hearts more than he did- he just had his status change so that he became eligible for the list and because his need is so great, he's top of list.

UNOS matching takes into account a lot of factors. Media attention is not one of them.
 
2013-08-14 06:32:23 PM
encrypted-tbn2.gstatic.com

//On Biography
 
2013-08-14 06:33:35 PM
THIS

\Love Scrubs.
 
2013-08-14 06:33:37 PM
Wow, this is such bullshiat. Mom thinks her precious snowflake is more deserving of a heart transplant than others. The kid is still a minor, which means that Mom is partially responsible for his lack of taking his medications and getting to appointments. Now that he is living on borrowed time, suddenly the importance of all that shiat he didn't do sinks in. Docs say no, she drops the race card, national news, and now someone who didn't care enough about his health several months ago gets bumped ahead of people who followed all of the rules.

Complete and utter bullshiat.
 
2013-08-14 06:34:17 PM
For reference on how the matching process works: http://optn.transplant.hrsa.gov/about/transplantation/matchingProcess . asp

This is not a "This kid ended up on ThinkProgress, boy howdy do we need to steal him someone else's heart"
 
2013-08-14 06:34:49 PM

Anastacya: Wow, this is such bullshiat. Mom thinks her precious snowflake is more deserving of a heart transplant than others. The kid is still a minor, which means that Mom is partially responsible for his lack of taking his medications and getting to appointments. Now that he is living on borrowed time, suddenly the importance of all that shiat he didn't do sinks in. Docs say no, she drops the race card, national news, and now someone who didn't care enough about his health several months ago gets bumped ahead of people who followed all of the rules.

Complete and utter bullshiat.


That's not what happened.
 
2013-08-14 06:34:53 PM

Raharu: In a major scientific first, a team of developmental biologists has built a functional mouse heart from human tissues. The results herald a future where specific patches of heart muscle - or even the whole organ - could be grown for transplantation.


No no no. This is Luddite dark-ages stuff. I mean like a single box you connect to your USB port and it can do anything at all from turbine blades to dollar store trinkets.

Man you Luddites really need to get with the times.

In the meantime, I signed my organ donor card, you??
 
2013-08-14 06:37:37 PM

skinink: When he's shot though this replacement heart, who will be to blame? Kid you give people waiting for a transplant a bad name.


I feel really bad for laughing at this.
 
2013-08-14 06:38:09 PM

Quantum Apostrophe: Raharu: In a major scientific first, a team of developmental biologists has built a functional mouse heart from human tissues. The results herald a future where specific patches of heart muscle - or even the whole organ - could be grown for transplantation.

No no no. This is Luddite dark-ages stuff. I mean like a single box you connect to your USB port and it can do anything at all from turbine blades to dollar store trinkets.

Man you Luddites really need to get with the times.

In the meantime, I signed my organ donor card, you??


That sounds awesome. Do you have any more info?
 
2013-08-14 06:40:35 PM
Cue a few dozen more people on the list taking advantage of HIPA restrictions to write a sob story that medical staff cannot confirm or deny without a legal shiatstorm.
 
2013-08-14 06:42:55 PM

Southern_guy: Cue a few dozen more people on the list taking advantage of HIPA restrictions to write a sob story that medical staff cannot confirm or deny without a legal shiatstorm.


Why do that, again earlier this year that little girls family sued to get to the top of the list. Just do that, boom.
 
2013-08-14 06:43:15 PM
Taking heart transplant meds would probably involve taking tacrolimus (twice a day), myophenolate mofetil (twice a day), prednisone (once a day), Bactrim (once a day), Valcyte (twice a day), and probably some diuretics and blood pressure meds that are once daily.

Then, frequent visits to the transplant center, starting off weekly, for blood draws and exams -- during which time many of the above medications may be adjusted. Plus some occasional biopsies via right heart catheterization.

Getting a transplanted organ is a BFD and an enormous commitment. (Kidneys and livers are a little more forgiving if you neglect the anti-rejection drugs.) We turn down people all of the time because of noncompliance, but usually they are adults and are obvious screw-ups, e.g. documented drug use, multiple missed appointments, documented noncompliance, etc.

He is at the top of the list because of the seriousness of his condition -- once they decided to list him, he probably shot up to the top by standard criteria.

Can't really fudge the listing process too much unless you feed skewed data. Here is how they allocate hearts:
http://optn.transplant.hrsa.gov/Polic iesandBylaws2/policies/pdfs/policy_9.pdf

See section 3.7.4, he is probably status 1A if he needs to be on continuous i.v. drips to support his heart function ("inotropes").
 
2013-08-14 06:44:21 PM

Genevieve Marie: This story has just... ugh. EVERY transplant patient is assessed for their willingness and ability to manage their condition, to comply with all doctor's orders and to deal with the massive life changes that accompany a transplant.

There's an excellent chance that this kid was assessed as non-compliant initially... and the family understandably freaked out about it instead of working with his team to figure out how to get him prepared. The fact that he's now on the list probably means that he got scared enough for his life to listen to his doctors and to figure out what it was going to take to get on the list.


No, it means the hospital are scared shiatless of the negative publicity and not only put him on the list but moved him to the front of the list.
 
2013-08-14 06:45:00 PM

Genevieve Marie: SordidEuphemism: As a relative of someone who is on an organ waiting list, this makes me more than a little grouchy.

Here's hoping that when this kid dies, he's signed his organ donor card.

Spend some time actually researching how the organ transplant waiting list works and how the matching is done. He's not at the top of the list because he jumped ahead of other people who need hearts more than he did- he just had his status change so that he became eligible for the list and because his need is so great, he's top of list.

UNOS matching takes into account a lot of factors. Media attention is not one of them.


I understand your point, Genevieve, but it certainly appears that his 'status change' is due to the media attention. His priority is not the immediate issue to me, simply a result of this attention. Please understand that I don't wish the kid ill, and I don't begrudge anyone getting a transplant who needs one, certainly, but the whole situation stinks. I do hope that he, and his family, have all updated their donor cards with this situation in mind.
 
2013-08-14 06:46:10 PM
If he's going to take care of the heart, I think this is a positive outcome.

I wish it didn't have to have gone the way it initially did, but sometimes waking up to the cold reality that your irresponsible behavior will result in your certain death may be the best thing that ever happened to you.
 
2013-08-14 06:46:33 PM

SordidEuphemism: As a relative of someone who is on an organ waiting list, this makes me more than a little grouchy.

Here's hoping that when this kid dies, he's signed his organ donor card.


I have a friend who needs two lungs. Repeatedly he's been called for transplant and the organs have been no good. He's running out of time.

I have very mixed feelings. On the one hand, my friend is over 40 with cystic fibrosis. He's already outlived everyone's expectations. But I know he will follow medical advice, rather than fail to take his meds or abuse transplanted lungs should he get them.
 
2013-08-14 06:46:41 PM
Shut up, Morbo! Transplant lists work that way now!
 
2013-08-14 06:47:41 PM

Genevieve Marie: Anastacya: Wow, this is such bullshiat. Mom thinks her precious snowflake is more deserving of a heart transplant than others. The kid is still a minor, which means that Mom is partially responsible for his lack of taking his medications and getting to appointments. Now that he is living on borrowed time, suddenly the importance of all that shiat he didn't do sinks in. Docs say no, she drops the race card, national news, and now someone who didn't care enough about his health several months ago gets bumped ahead of people who followed all of the rules.

Complete and utter bullshiat.

That's not what happened.


I am sorry, but I disagree. This isn't a question of his health status, this is a question of whether or not he should get on the list in the first place. The kid has a history of not taking his meds and generally not taking care of himself. There are people, I am sure, who are in as severe, if not worse than, health than this kid. He biatched to the media because suddenly he had to be accountable for his actions and did the "bbbbb-ut racism!" and then the doctors CHANGED THEIR MINDS. That has nothing to do with whether or not this kid qualifies for a transplant, this has EVERYTHING to do with the hospital not wanting to be labeled as racist or any other negative connotation. This whole move is a PR stunt, and it is reprehensible.
 
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