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(CBS News)   It took a court order, but a 10-year old girl with only weeks to live is now allowed to receive adult lungs   (cbsnews.com) divider line 153
    More: Strange, lung transplant, court orders, adult lungs, suspend the rules, Robert Bales, lungs, Lou Barletta, Kathleen Sebelius  
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4560 clicks; posted to Main » on 06 Jun 2013 at 1:00 PM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2013-06-06 03:31:12 PM

redTiburon: live with it, libtards. Some die.


I'm a Fark Librul™. Do you see me defending the decision

skullkrusher: Serious Black: skullkrusher: Serious Black: Everyone sitting here yelling about how this 10-year-old girl deserved to be on the list as if she were an adult has an incomplete set on information about this case and what will happen if, because she has been moved up on the list, somebody else gets denied the lungs she gets.

and that's the heart of the discussion (NPI). It is undeniable that someone gets denied the lungs if she gets them. However, if 12 is just used as an age to break up the two lists because of body size, it is not unfair that she gets the lungs ahead of someone else. She should have been ahead of them in the first place if all else is considered.

And what pseudoscience just posted is exactly what I had said before: that there is an unproven track record behind giving adult lungs to a child. I mean, why else would UNOS create a rule that looks arbitrary to you and me? I highly doubt they are either incompetent or malicious. They did it for a good reason, and they know far more about the actual statistics behind organ transplantation than anybody here or anywhere else biatching that they're sentencing this girl to death. Nobody knows better than them that they are sentencing people to death.

sorry, I missed psuedo's post. That is a different story but apparently there is some difference of opinion on the matter between the unnamed expert in TFA and the guy in psuedo's post


There may be. And if there is, UNOS will certainly review and revise the rules. Perhaps they will change it. I wouldn't hold my breath though; their latest guidance describes children under 12 who need lungs as already existing under "unique circumstances." I can't imagine three or four years will change those unique circumstances so much that they can put pediatric and adult cases on the same priority list.
 
2013-06-06 03:32:18 PM

pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?


I'm sayin' I wanna inspect 'em
 
2013-06-06 03:32:35 PM

pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?


I'd say she's an expert on breast implants at the very least.
 
2013-06-06 03:33:50 PM
We wouldn't need arbitrary rules if we just put organs up for auction.
 
2013-06-06 03:36:22 PM

Serious Black: pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.


I'd say she probably fits the size requirement.
 
2013-06-06 03:38:58 PM

Serious Black: pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.


YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL
 
2013-06-06 03:44:04 PM
So if she gets adult lungs...does that mean she's allowed to smoke?

What if she gets other adult parts?

/Like a liver....for drinking....you pervert.
 
2013-06-06 03:47:22 PM

skullkrusher: Serious Black: pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.

YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL


This is why I love Fark. We can go from sniping at each other over literal life-and-death issues to cracking jokes and falling prey to our animalistic sexual drive at the drop of a hat.
 
2013-06-06 03:51:38 PM

Serious Black: skullkrusher: Serious Black: pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.

YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL

This is why I love Fark. We can go from sniping at each other over literal life-and-death issues to cracking jokes and falling prey to our animalistic sexual drive at the drop of a hat.


Yep. I'd love it more if you liberal leeches would start posting more "lung" pics rather than just taking mine
 
2013-06-06 03:53:13 PM

Serious Black: skullkrusher: Serious Black: pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.

YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL

This is why I love Fark. We can go from sniping at each other over literal life-and-death issues to cracking jokes and falling prey to our animalistic sexual drive at the drop of a hat.


Future band name?
 
2013-06-06 03:55:57 PM
The best solution to these kinds of problems is simply to make organ donation mandatory.

You're dead. You're not using it any more. You have no 'rights' as such, nor does the right of the family to ritual or superstition supercede the saving of another life.

I will grant that this will necessitate changes in how death is decided upon, many people are afraid they'll be essentially harvested for organs instead of all attempts made to save them. But that can be done.

We wouldn't have too many people dying waiting on transplants that's for damned sure.

/donating my bits to SCIENCE biatches
 
2013-06-06 04:00:46 PM

BarkingUnicorn: We wouldn't need arbitrary rules if we just put organs up for auction.


NO.

cdn.motinetwork.net
 
2013-06-06 04:07:29 PM
My understanding of how all this works there is a zero percent chance that someone who would not of died, will now die.
 
2013-06-06 04:08:14 PM
Sigh i meant 100%
 
2013-06-06 04:08:56 PM

skullkrusher: Serious Black:Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.

YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL


No, she's not. She does have naturally large breasts but she felt she needed to get some CRAZY LARGE boobs to stand out from the crowd.

Hate when women do that.

/she has no ass anyway
 
2013-06-06 04:11:14 PM

peterthx: skullkrusher: Serious Black:Are you insinuating she is an expert on lungs?

I'd say she's an expert on breast implants at the very least.

YOU TAKE THAT BACK! DENISE MILANI IS 100% NATURAL

No, she's not. She does have naturally large breasts but she felt she needed to get some CRAZY LARGE boobs to stand out from the crowd.

Hate when women do that.

/she has no ass anyway


You can get ass implants now. My ex was seriously considering getting them at one point.
 
2013-06-06 04:15:40 PM

Daeva: My understanding of how all this works there is a zero percent chance that someone who would not of died, will now die.


Daeva: Sigh i meant 100%



Your understanding is incorrect.
 
2013-06-06 04:20:35 PM

Daeva: My understanding of how all this works there is a zero percent chance that someone who would not of died, will now die.


That's not how transplant lists work. Someone sicker than her will still get the lungs.
 
2013-06-06 04:24:35 PM

SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.


actually thats exactly what life is about
SURVIVAL OF THE FITTEST!
 
2013-06-06 04:50:37 PM

Serious Black: skullkrusher: Serious Black: What do you think the organ donation list is? It's a priority queue. By being considered as if she is 12 years old instead of 10, she jumped ahead of a lot of other people on the list. Just because she may not be (almost certainly isn't) priority #1 doesn't mean she isn't being prioritized ahead of a lot of other people now because of the change. And if she does get a set of lungs because of this reprioritization, somebody else inevitably will not get them.

but the reason she was in the back of the list was an arbitrary rule about adult lungs in younger patients. It'd be like saying the red-heads have to wait until all others have been given a shot at an available organ and then changing that policy (even if only in one instance at the moment) and then saying that that ginger is jumping ahead of people. Technically, yes, but not unfairly so.

KiltedBastich: Gotta agree with skullkrusher here. The point is that there should not be an arbitrary limit. Triage still applies. The lung she needs would still have to be small enough and the right blood type, and it would still be allocated based on severity of need. All this ruling really does is allow those standards to be applied to her, rather than a rubber-stamp "Not Eligible For Transplant" ruling.

She wasn't stamped as not being eligible for a transplant. She was simply placed on a waiting list for pediatric lungs. Part of the reason there is a separate list for adult and pediatric lungs is that there is little research on how a child will handle adult lungs. Will the child turn out just fine? Will they not be able to breathe as a result of potentially jamming the lungs into a cavity too small for them? We simply do not know.

Let's not gloss over the ethics here. Regardless of this ruling placing the girl on the adult transplant list, there are far too few sets of lungs available to ensure everybody on that list will get a transplant. By ordering that this 10-year-old girl be considered ...


There's no way to know the answer to that. As the mother of two young children, I can tell you that I would fight to hell and back to keep my children alive. And why is the life of a 10-year-old who needs a lung transplant thanks to a bad genetic gene not as meaningful as the life of a 60-year-old man whose lungs have been compromised by years of smoking? The 10-year-old still has her whole life ahead of her, and who knows? Maybe SHE will be the one who goes on to cure CF.

/Suffer the little children to come unto me and forbid them not, for of such is the kingdom of God
//unless of course the suffering can be alleviated by a lung transplant, and then all bets are off
 
2013-06-06 05:09:21 PM
Doesn't the Mother kinda resemble Adolf Hitler Campbells mother?

/Just sayin'
 
2013-06-06 05:10:00 PM

TrixieDelite: Serious Black: skullkrusher: Serious Black: What do you think the organ donation list is? It's a priority queue. By being considered as if she is 12 years old instead of 10, she jumped ahead of a lot of other people on the list. Just because she may not be (almost certainly isn't) priority #1 doesn't mean she isn't being prioritized ahead of a lot of other people now because of the change. And if she does get a set of lungs because of this reprioritization, somebody else inevitably will not get them.

but the reason she was in the back of the list was an arbitrary rule about adult lungs in younger patients. It'd be like saying the red-heads have to wait until all others have been given a shot at an available organ and then changing that policy (even if only in one instance at the moment) and then saying that that ginger is jumping ahead of people. Technically, yes, but not unfairly so.

KiltedBastich: Gotta agree with skullkrusher here. The point is that there should not be an arbitrary limit. Triage still applies. The lung she needs would still have to be small enough and the right blood type, and it would still be allocated based on severity of need. All this ruling really does is allow those standards to be applied to her, rather than a rubber-stamp "Not Eligible For Transplant" ruling.

She wasn't stamped as not being eligible for a transplant. She was simply placed on a waiting list for pediatric lungs. Part of the reason there is a separate list for adult and pediatric lungs is that there is little research on how a child will handle adult lungs. Will the child turn out just fine? Will they not be able to breathe as a result of potentially jamming the lungs into a cavity too small for them? We simply do not know.

Let's not gloss over the ethics here. Regardless of this ruling placing the girl on the adult transplant list, there are far too few sets of lungs available to ensure everybody on that list will get a transplant. By ordering that this 10-year-old gir ...


There's no way to know the answer to that. As the mother of two young children, I can tell you that I would fight to hell and back to keep my children alive. And why is the life of a 10-year-old who needs a lung transplant thanks to a bad genetic gene not as meaningful as the life of a 60-year-old man whose lungs have been compromised by years of smoking? The 10-year-old still has her whole life ahead of her, and who knows? Maybe SHE will be the one who goes on to cure CF.

/Suffer the little children to come unto me and forbid them not, for of such is the kingdom of God
//unless of course the suffering can be alleviated by a lung transplant, and then all bets are off


Of course you would! I would fight for my child to get a lung transplant too if they were weeks away from dying from cystic fibrosis. So would every single parent I know. And therein lies the problem. Every single person who is on the transplant list has friends and family who would fight to ensure that they get a transplant, and they all have tragic sob stories about how their life has so much potential that will be extinguished if you give John Doe's lungs to Jane instead of the person they want to get a transplant. That's why we have impartial rules to place people who need organs more and have a higher chance of accepting them higher on the priority list, and that's why we have medical boards to determine whether somebody should even be placed on the priority list in the first place. They stop subjective factors that nobody can accurately judge in the first place from weighing in on the process.
 
2013-06-06 05:12:35 PM

studs up: bgilmore5: BTW, the Repubs don't give a damn about the sanctity of life

I was informed that this is a major problem. Pro-Lifers run that party. Has someone changed the definition of "sanctity of life" while my lappy re-booted?



Self-described "pro lifers". They believe a woman should carry a child to full term even if it means she could die from the complications.  They also believe by political affiliation that once that baby is born society should say "fark you" if you are ever in need. I stand by my statement.
 
2013-06-06 05:24:58 PM
Everyone seems to be all wah-wah about this child's tragic situation, and the possible situation where it's perceived that some other child might die because they are further down the list.

Let's also keep in mind that for this plan to work, a healthy child of the right size and blood type has to die first. Will we call that a triumph?
 
2013-06-06 05:28:48 PM

highwayrun: Everyone seems to be all wah-wah about this child's tragic situation, and the possible situation where it's perceived that some other child might die because they are further down the list.

Let's also keep in mind that for this plan to work, a healthy child of the right size and blood type has to die first. Will we call that a triumph?


I will throw an enormous party with mountains of booze, pot, cocaine, and hookers right outside of that kid's funeral if this girl gets their lungs.
 
2013-06-06 05:35:06 PM

pseudoscience: skullkrusher: pseudoscience: One key point:

What if my doctors do not agree with my lung allocation score or pediatric priority?
If your transplant physician or surgeon believes that you have exceptional characteristics, and that your needs are not adequately reflected by your lung allocation score, then your transplant center may ask the Lung Review Board to review your situation. Similarly, if a transplant physician or surgeon feels that a lung candidate younger than 12 has a medical condition comparable to Priority 1, but does not meet one of the criterion listed in policy, they may request the Lung Review Board to review the pediatric candidate's situation. The Lung Review Board is a national group of transplant physicians and surgeons who will consider your special circumstances and determine what steps to take.

So there is a medical board that can review your case. I have no knowledge of what happened here, but I suspect the board already reviewed it and the family didn't like their answer. I admit I would probably do the exact same thing if it was my child, but this stepping over the line.

how does one get a position on this board?

[cdn.unrealitymag.com image 540x810]

Are you insinuating she is an expert on lungs?


That happens to be a portrait of Dr. Ruth Ella Steinberg, M.D., Ph.D. , former Senior Pulmonology Analyst at the Lawrence Livermore Space Science Laboratories and now Professor of Transplant Science at the UCLA Medical Center's Center for Applied Bioethics in Medicine and a teaching fellow at Cedars-Mt.Sinai.

You just took her Maxim photo shoot completely out of context.
 
2013-06-06 05:49:18 PM

SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.


Actually, it is the spirit of life.  Survival of the survivors.  I agree with the rest of the statements, tho
 
2013-06-06 06:00:40 PM

bgilmore5: Trey Le Parc: bgilmore5: Truther: SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.

Lemme guess - you are a liberal Democrat...

/What do I win?

You must be a Republican. You make all your decisions based on emotion. No amount of scientific evidence is necessary. Medical decision must be made purely on whether or not the sick white person is like you. "Teri Schiavo was fully functioning when those judges killed her."

Generally, champ, liberals condemn Republicans for being unfeeling gestapo property rights Nazis more interested in money than the sanctity of life.  You need to get your talking points straight if you're going to fall into lockstep with your progressive overlords.

Everyone is a liberal or conservative. I forgot. Are you saying Republicans embrace logic and science? There's plenty to be said for your argument. If her brain had not liquified while Republicans paraded her corps around on TV, Teri Schiavo probably would agree Republicans are "unfeeling gestapo property rights Nazis more interested in money than the sanctity of life." BTW, the Repubs don't give a damn about the sanctity of life.


You are a bigot and a racist.  Have a nice day.
 
2013-06-06 06:08:31 PM
Who's going to pay the person's family for providing the lungs for someone else? Everyone else in the transplant chain is getting a little scratch, why not the family of the deceased?
 
2013-06-06 06:11:06 PM

hardinparamedic: DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?

She didn't get bumped up the transplant list, you know. There's no guarantee they will even find a donor in time to save her.

On the other hand, it was pointed out that the rule existed because there was no guarantee the 10 year old's chest would be large enough to be able to accommodate an adult's lungs.

Asking the DHHS to intervene though was stupid. They don't make the rules, IIRC. The transplant foundations do.

DamnYankees: I understand that, but by being put on the list at all, she's displacing everyone who would go below her. I feel very badly for this girl and her family, but I also feel badly for everyone else on the list. I'm not sure why this person is getting precedence.

Probably because her condition is all but curable with a transplant, and she's a 10 year old child, which means she's much more likely to survive the surgery than the 70 year old guy who smoked for 40 years.


They're getting in a little practice. It's a trial run on how the death panels are going to work.
 
2013-06-06 06:32:47 PM
www.lifenews.com

Good luck, biatches
 
2013-06-06 07:08:23 PM

DamnYankees: I understand that, but by being put on the list at all, she's displacing everyone who would go below her. I feel very badly for this girl and her family, but I also feel badly for everyone else on the list. I'm not sure why this person is getting precedence.


You are overlooking that in some cases the rule is capricious - and has it origins by and large in size matches. If the girl is big enough for the lungs, she should be allowed to at least be on the list to get them. The list doesn't guarantee a match - and she's not at the top of it so no precedence, just a chance.

Oh and please everyone (who doesn't believe in a mythical being who would rather your meat rot than be used to save a life) please consider joining a donor registry - every little bit helps...
 
2013-06-06 07:10:20 PM

skullkrusher: DamnYankees: And the person who is going to die because they aren't getting those lungs? What's that person's name?

why does that matter? Did she skip to the head of the line or is this ruling just a matter of her not being forced to the back of it?


The ruling is about her being allowed on the list at all. Previously she wasn't even on the list.
 
2013-06-06 07:19:01 PM

Magnus: SecretAgentWoman: There is no guarantee yet she'll get lungs before she dies.

But honestly, shoehorning too-big adult lungs into a child that may not even be able to use them to leave an adult or even possibly an OLDER child to die is so much more humane, right?

/not

I grieve for the child and parents, but truly, medicine is not perfect, and life sometimes sucks. A line has to be drawn somewhere, and kicking others down to claw your way over them is not really in the spirit of life.

Actually, that is precisely the spirit of life.  Maybe not our general definition of civilized life, but in a battle for your own survival it definitely is the way it happens.  Survival instincts are very powerful.  But, yeah, no guarantee.

If the person who gets booted down the list files suit, that'll really eff things up in this case.  Hmmm, who to choose, who to choose?


That can't happen with the transplant list. I also wonder how many people are aware of the number of organs that have been donated and are eligible for transplant don't get used - mostly because a match to a needed organ occurs in a place too far away, and there is no 'meet the organ in the middle' plan. Adding to the list may or may not affect anyone else on the list - and may or may not even save her. It just buys her the same shot everyone else on the list has.
 
2013-06-06 07:29:34 PM
Wonder if this would have happened if she was a little black girl.  Or a little black boy for that matter.

/apologizes
 
2013-06-06 07:31:16 PM

Satanic_Hamster: hardinparamedic: Satanic_Hamster: hardinparamedic: Probably because her condition is all but curable with a transplant, and she's a 10 year old child, which means she's much more likely to survive the surgery than the 70 year old guy who smoked for 40 years.

Wait, I thought she had MS?  Didn't think a transplant would "cure" that.

Cystic Fibrosis.

Doh, thought it was ms.  Didn't read the current article, just past ones / on other services.

Will a transplant actually cure CF?  I know CF destroys your lungs, wasn't aware that a lung transplant was a perm. fix.


I'll try and field this one. Had a childhood friend with CF get a lung transplant about 2 months ago. She is 26 years old and I read up a little bit about it. She got great medical care pretty much all during her life and eventually got down to 15% lung function or so and was lucky enough to get a match. She posted updates to a FB page and some of it was quite rough.

You have to have a double transplant since one of the major issues is bacterial infection in the lungs.
Survival rate is decent, but not outstanding. Perhaps 50% after 5-10 years.
You are never "cured" of CF but at least in terms of lungs things look very positive. The excess mucus is no longer produced and assuming you recover from the surgery you can eventually have a fairly normal active life. Several other organs and systems are impacted by CF as well and those concerns still exist. You don't "use up" those lungs and need another pair unless there are other complications.

She has a public Facebook page if you'd like an idea of what someone faces and goes through:
https://www.facebook.com/pages/Inhale-Exhale-Repeat/558027427555743
 
2013-06-06 07:38:44 PM

BarkingUnicorn: We wouldn't need arbitrary rules if we just put organs up for auction.


Or better still, not do these sorts of operations at all. I am also including the extensive money spent on curing cancers, and on extreme premmie births and defects.

What to know why the healthcare system is over burdened? We as a society are so terrified of death that we now view it as unnatural and a thing to be cured. Better palliative/end of life care would be far better.

Yes, I realize that it is very Malthusian of me, and also that I'm about to hit some more 'ignore' lists, and before some one responds with a just wait until a loved one of yours faces death - I've been through it, and yeah it sucks, but life will out. We, in the western world, are in some ways as greedy for a life span as we are for cars and material gain. And just as the planet could use a few less landfills, and far less demand on resources we seem incapable of husbanding, it could use a few less people. I can't think of a less arbitrary way of managing a population as greedy and affluent as ours than allowing life to take it's course.

Maybe then we could solve a few real problems rather than stave off the inevitable.

That said, my donor card is signed, and maybe someday, some one will get an eye, or some muscle, or a bone or two - but I'd prefer it if no one got a cure for something that should have killed them out of it.
 
2013-06-06 07:41:20 PM

Daeva: My understanding of how all this works there is a zero percent chance that someone who would not of died, will now die.


You math is correct.
 
2013-06-06 07:46:23 PM

Daeva: Sigh i meant 100%


Now your math is wrong.

The balance of probabilities for an unspecified someone is that someone who would not have died will now die is still zero since someone will still die and someone will still live. So no change.
 
2013-06-06 07:47:27 PM

hardinparamedic: DamnYankees: This is why we let doctors and transplant boards make these decisions. Not judges, not you and not me. There's a reason about age cutoffs, and it shouldn't be overturned by a judge.

The problem is that, as pointed out in TFA, the rule was made a long time ago, and may no longer be valid thanks to advances in organ procurement and selection. The arbitrary age range may also be flawed as well.

I do agree with you, though, that the courts intervening create a dangerous president for anyone who has enough money to take transplant boards to court.

 The current laws on the books were revised in 2005, reflecting advances in medicine.


Children are NOT excluded from getting an adult organ, as many have claimed. Instead, adults are simply given priority for adult organs. If the donated adult organ is not a match to any patient on the Adult list, then patients on the Pediatric list are considered.

An exemption also exists that allows children of at least 11 years old to be placed on the Adult list in addition to the Pediatric list, if they meet minimum height and weight requirements.

Inversely, however, adults are NEVER eligible for a child's organ, for obvious reasons. If a match cannot be found on the Pediatric list for a child's donated organ, the organ goes to waste.

And now, we have the judge's ruling. Thanks to his ruling, he has set a precedent that will allow people to circumvent the rules through lawsuits. If his ruling stands, the law has to be scrapped. There is no point to having a set of rules governing the process, if the rules can be altered at will by Judicial Decree.
 
2013-06-06 07:49:08 PM

bgilmore5: studs up: bgilmore5: BTW, the Repubs don't give a damn about the sanctity of life

I was informed that this is a major problem. Pro-Lifers run that party. Has someone changed the definition of "sanctity of life" while my lappy re-booted?


Self-described "pro lifers". They believe a woman should carry a child to full term even if it means she could die from the complications.  They also believe by political affiliation that once that baby is born society should say "fark you" if you are ever in need. I stand by my statement.


I just mentally replace pro-life with pro-birth to erase the logic holes in their stance.
 
2013-06-06 08:09:55 PM

Magnus: Serious Black:

Previously, she had no shot at those lungs even if she were the only one to match.


Incorrect.

The rules plainly state that patients on the Pediatric list are eligible for a lobe transplant of an adult organ *IF* no adult patients match. The parents and the media have been misrepresenting or misunderstanding the rules. This whole lawsuit thing was a last-ditch effort on the part of the parents to save their little girl.

I can understand their reasons. But, the fact remains, *if* she gets an adult lung, her odds of survival are less that her survival rate with a child's lung, and roughly 1/2 the survival rate of an adult patient getting an adult lung.
 
2013-06-06 08:22:40 PM

skullkrusher: Serious Black: UNOS, the United Network for Organ Sharing, last revised the rule in 2010. What's changed since then that pediatric cases can handle adult lungs? What's change that makes having two separate lists for organs irrelevant?

I don't know. IANAD. I am going by the information I have and discussing the ethical issues about her bumping someone off the list. Why are there 2 separate lists? Why is age 12 important? Is it based on body size?


Yes, its based on body size. The vast majority of children under 12 are simply too small for even a lobe (or partial organ) transplant from an adult organ. Even with a lobe transplant, they may not be able to transplant enough of the organ to sustain normal function. This is why children are placed lower in the queue for adult organs.

And I will state this again for clarity:
Children on the Pediatric list are ALSO on the Adult list. HOWEVER, they are placed further down in priority than adult patients.

Inversely, Adult patients are NEVER eligible for children's organs.
 
2013-06-06 10:08:26 PM

Satanic_Hamster: hardinparamedic: Probably because her condition is all but curable with a transplant, and she's a 10 year old child, which means she's much more likely to survive the surgery than the 70 year old guy who smoked for 40 years.

Wait, I thought she had MS?  Didn't think a transplant would "cure" that.


No, she has cystic fibrosis.
 
jph
2013-06-06 10:40:10 PM
Holy cow! Lots of misinformation here.

First off, let me start by saying that I have a 19 month-old boy with a heart transplant. I also have met Dr. John Roberts, head of UNOS, and I have met some of the people that are deeply involved in making the decision. I will also be at one of the meetings where I expect changes to the rule in question to be proposed and/or voted upon.

Here are the facts:

1. Sebelius does not have the power to force UNOS to do anything. She controls a couple of non-voting seats on the 48-member board, and she has the ability to affect the periodic OPTN contract renewal. Other than the contract renewal, the structure of the board means that a transplant recipient on the board could have more power over an individual decision than her. Of course, the renewal prospect has a major effect.
2. It is uncertain whether or not a lung from the adult pool can be found that will fit her. Lobar transplants can work sometimes, but are not as certain.
3. She has cystic fibrosis. With a transplant, that has a half-live of five years. Life expectancy is 70% at one year. It gets worse from there. Much worse. CF will eventually render her new lungs useless.
4. The OPTN policy in question is there to protect children by keeping adults out of the pediatric pool. In this case, it had potentially the opposite effect.

So the question is -- what happens if anyone who can find a media outlet, Congresscritter, or judge can lobby to have their listing status raised?
 
jph
2013-06-06 10:43:29 PM
Let me also add: I can and will provide citations for my points upon request if necessary.
 
jph
2013-06-06 10:45:45 PM

llachlan: The ruling is about her being allowed on the list at all. Previously she wasn't even on the list.


There is only one list, and she was on it. Her age simply excluded her from the "match run" sorting criteria that would cause a hit when an adult lung came up. Last night, UNOS programmers jury-rigged the software to force her to be classified as an adult.
 
jph
2013-06-06 10:55:23 PM

Erder: I'll try and field this one. Had a childhood friend with CF get a lung transplant about 2 months ago. She is 26 years old and I read up a little bit about it. She got great medical care pretty much all during her life and eventually got down to 15% lung function or so and was lucky enough to get a match. She posted updates to a FB page and some of it was quite rough.

You have to have a double transplant since one of the major issues is bacterial infection in the lungs.
Survival rate is decent, but not outstanding. Perhaps 50% after 5-10 years.
You are never "cured" of CF but at least in terms of lungs things look very positive. The excess mucus is no longer produced and assuming you recover from the surgery you can eventually have a fairly normal active life. Several other organs and systems are impacted by CF as well and those concerns still exist. You don't "use up" those lungs and need another pair unless there are other complications


I realized that my statement above puts me at odds with what you have said, so I'll post this from the American Journal of Transplantation:

We recently reported our recipient outcomes during our first decade of experience with living lobar lung transplantation (11). One hundred and twenty-eight transplants were performed in 123 patients during this time period. Actuarial survival with this procedure is 70%, 54%, and 45% at 1, 3, and 5 years, respectively, which is similar to the actuarial survival reported for double-lung cadaveric transplantation from the International Society for Heart and Lung Transplantation Registry (74%, 59%, and 49.5% at 1, 3, and 5 years, respectively). We were also able to show that patients intubated preoperatively and those undergoing re-transplantation had higher postoperative mortalities, suggesting caution in these populations. Although cadaveric transplantation remains preferable, these results have shown that living lobar lung transplantation has been life-saving in a select group of severely ill patients who would have either died or become unsuitable recipients before a cadaveric organ became available.

Things haven't changed much since then for lung TX recipients.

Source:  http://onlinelibrary.wiley.com/doi/10.1111/j.1600-6143.2004.00514.x/f u ll
 
2013-06-06 10:58:44 PM
 
2013-06-06 11:11:39 PM
Not enough child sized donor organs available? Just go shoot up an elementary school. Problem solved.

/too soon?
 
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