Parunts of Transplant Line-Jumper Want To Censor Critics

I'm sure we all remember the lung transplant case from last year; where parunts of a 10-year-old sued to get her put on the adult list and jumped to the head of the line. As a result, she actually got 2 sets of adult lungs; the first set having been rejected; the second set having been cut down by 80% and most of the lungs thrown away.

Well, apparently there is a Fakebook page up for a discussion group about the ethics of line-jumping and the fact that the 10-year-old doesn't seem to be doing all that well.

These parunts, and their supporters actually started petitions and barraged fakebook with complaints to try and get the page taken down. Why? Because having a negative opinion of people trying to buy lungs and sue to get to the head of the line is "mean". And how dare people think what they did was wrong.

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A social media group, Discussing Lung Transplantation and Sarah Murnaghan, was started on Facebook, which questioned whether the young girl should have been given adult organs, and if threatening to sue had been the right course of action.

Before she received the operation, Sarah had been in hospital for three months with end-stage cystic fibrosis, and was on a ventilator.

Because of rules governing how organs are distributed, Sarah would only have been offered a transplant if a donor under 12 was found - which is rare.

Last month Mrs Murnaghan asked supporters of the family to complain about the Facebook page that criticized her campaign to change the ruling, and petition to have it removed, claiming her daughter was being targeted unfairly.

The page has posted updates on Sarah's recovery, and how she needed a second set of lungs after the first transplant failed.

It is also used as a forum for discussing other transplant cases and the medical and ethical issues surrounding the life-saving surgery.

http://www.dailymail.co.uk/news/article-2575173/Familys-anger-Facebook-group-critics-say-11-year-old-girl-shouldnt-given-adult-lung-transplant.html

I think we all can -- and did -- agree that it sucks that the girl was sick, but it was terribly wrong for her parunts to decide that her life was more important than everyone else who needed a transplant. Not to mention, it was very wrong that a whole set of lungs was thrown in the trash because she rejected them. Those lungs could have saved someone else.

But then, it makes no logical sense in the world to give lungs that are way too big to a chyld, simply because they are a chyld. There is obviously a reason why the list exists the way that it does. As I noticed, there are categories of Under 12, 12-17, and then adult. From what I understand, an under-12 could possibly get lungs from someone 12-17, if there was no one in that age group in need. So, saying Under-12s can only get lungs from someone under-12 is incorrect. Again, it's common sense here that lungs from someone in the same age group would be the most appropriate size and fit, but they can get from Over-12, just not from 18 and up.

What's ridiculous too, is that I read something like 20 kyds are on the lung transplant list at any given time; whereas for adults, it's 1,600. So, since there is a much huger need for adults to receive lungs than for kyds, it is really disturbing that the judge allowed these parunts to do a runaround, twice, to steal from waiting adults. Of course, with parunts like this girl's, they probably think every chyld should get their transplant before any adult even gets one.

Bleh.

Here's the FB group. See anything hateful? Cause I don't. https://www.facebook.com/pages/Discussing-Lung-Transplantation-and-Sarah-Murnaghan/151579185034722

I question the wisdom of putting the child's name on the page. It could merely be stated "a 10-year-old awaiting a lung transplant." By naming the child, yes, it would create sympathy among the weepy-types (not me). It appears that the specific child is being targeted and not the issues surrounding the case - which is what particularly needs to be discussed.

ETA: went back and looked at the page again. I notice that other transplant patients are being discussed; both succesful, not successful and waiting. That should, I think take away the focus of the unfair transplant being named, but it would probably still have been wise to not include her name in the title of the FB page.

I agree the kid's name shouldn't be made public, but it was her Moo who caused that and no one else. It was the Moo who put her face in the media spotlight for all to see and she did it on a regular basis too for weeks on end.. Even if the kid's name had been removed, with all the prior media attention, including videos and pictures posted by Moo, everyone would have known exactly who was being discussed.

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If YOU are the "exception" to what I am saying, then why does my commentary bother you so much?
I don't hate your kids, I HATE YOU!

The girl's pahrunts—and the other attention-whoring pahrunts of children who have crusaded for their sprogs to get organs after the doctors said no—need to thank their lucky stars that the UNOS rule change of about 10 years ago was not made to apply to them.

The United Network for Organ Sharing (UNOS) urged member hospitals that did organ transplants to change their guidelines after the famous Todd Krampitz case 10 years ago. He was in his early 30s, just married, and suddenly became sick. The diagnosis was that he needed a new liver stat, but he was "too sick" to go on the waiting list. The only hope was a directed donation, meaning that a donor's family would have to direct that their loved one's compatible liver go to him.

Krampitz's family advertised on billboards in the Houston area soliciting a donor. This made national news in 2004, causing a firestorm in the bioethics field. After several days he got a directed donation and had the transplant. The sad outcome was that over the next several months he improved dramatically, got well enough to drive a car again, but then became sick from complications (apparently not organ rejection), quickly deteriorated, and died in mid–2005.

In the wake of the case, UNOS issued guidelines asking hospitals not to perform transplants for would-be recipients who seek publicity to jump the queue to get a new organ. These guidelines have in fact been invoked for others in other states who have run ads and the like.

But we've recently seen instance after instance in which parents of a child or young adult with congenital medical problems or mental retardation have run to the media raising a stink after their kyd was denied a transplant. The denial has usually been for sound medical reasons, not least of which is the ability to follow the medical regimen required after a transplant. There is absolutely no point in a transplant when the outcome is likely to be bad with quick failure of the new organ.

The girl who got the two sets of lungs despite having severe cystic fibrosis with a life expectancy even with the transplant of no more than several more years—she's one of several examples we could cite. There is also the autard in his 20s who is still awaiting a heart transplant, though his mom keeps the case alive in news publicity. Tell me: how is attention whoring in the media demanding a new organ for Tardley or Defectina different from a billboard ad?

If the UNOS policy were strictly applied, the girl would have been denied any transplant. That these parents keep getting away with publicity seeking should show the breeder bias in the corrupt organs system.

All right, I'm off the soapbox again. You long-time Bratfreers know this topic raises my hackles. Sorry.

Yeah, I could almost understand the parunts arguing about using Sarah's name on the page, except for the fact that they whored themselves all over the media for days on end, to get Sarah special treatment. Once you voluntarily plaster yourself all over, it's laughable to claim that someone who is discussing your case is violating your privacy.

The parunts simply do not like that facts and evidence are coming out, that are contradicting their controlled campaign. They can't have anyone shooting down the narrative that Sarah had this transplant, a miraculous recovery and that her life is like a fairy tale. They need the narrative to stand up, lest they face even more criticism. They sure don't want to hear anyone say that they strong-armed their way ahead of everyone else, only to have it been a failure twice. That's why we never heard about the failed transplant until a second one was completed a few days later. They would've lost their support if everyone knew how it was really going.

With or without the FB page, there have been pictures of Sarah in the media, because her parunts had to have to plastered on the front pages accepting some award. Not to be mean to the chyld, but she does not look good. She's twice the size she used to be -- a side effect of the anti-rejection drugs? Or? I know that they say that steroidal medicine causes puffiness, but I'm not sure a transplant recipient would be on something like that.

Apparently, she's also still on a ventilator, 9 months later. If someone is on a ventilator to breath, it kinda seems like that might mean that the transplant isn't successful. They have another story on that page about a kyd who got a transplant around the same time as Sarah -- but he got pediatric lungs -- and he's back to school, playing sports, etc.

I'm nowhere near a medical professional, but I can't help but look at that picture of Sarah and wonder if she has any quality of life at all. She doesn't look like she can possibly do anything. If she's on a ventilator and ballooned to twice her size, I can't help but wonder the stress on her heart, as well as the donor lungs. The FB page operator has commented that the girl has bone deterioration issues in her back and other areas; attributing it to the immuno-suppressant drugs. If that's the case, I can't imagine any quality of life at all.

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kman
Krampitz's family advertised on billboards in the Houston area soliciting a donor.

I remember those billboards well, as I passed one on the way to and from college everyday. I think one was left up for ages after he'd had the transplant, as it was on a backroad (1314 near Porter IIRC). I did wonder what happened to him. I had mixed feelings about it back then too, although I understood the desperation. My feelings against it have only grown stronger over time. I'm glad the UNOS ruled the way it did, and I wish it would apply everywhere to everyone.

I really wish that rules applied to *everyone* - and that people couldn't pick and choose which ones to follow just because "it's a chyyyyuld." I used to be an organ donor, back when there was a sticker on my license. I took the sticker off after some unsettling stories I read, but I still told everyone that I wanted to. I've flat out told people that this case - the girl getting 2 sets of adult lungs because her pahrunts pitched a hissy - has made me make damn sure that everyone who would make a decision was informed that there will be NO organ donation if I die unexpectedly. Those people pitch a fit, whine and cry when they hear that. When I renewed my license, I put down no. I have mixed feelings about it, because eventually my mom will need a cornea transplant, unless there is a innovation in treating her eye disease. But as it stands now, with line jumping all over the place because "chyyyyuld" and not following rules, I can't be part of that - even when I'm dead. God forbid if they ever get uterine transplants to work, or start harvesting eggs from dead people for the infert moos, then I'll definitely be off the donor list for good.

"Selfishness is not living as one wishes to live, it is asking others to live as one wishes to live." - Oscar Wilde

If they have changed their rules they aren't enforcing them There is currently a couple of billboards wherr I live with a large picture of a saintly looking woman and the message that her husband needs a kidney.

I read somewhere that organ donation is only really acceptable up until age 28, and that all of us over 28 are just making a PC statement by keeping the little indicator on our licenses after that.
Anybody know the truth of the matter? I've been wanting to take the little heart off my license for a long time now, I'm just a sucker for the ease of online renewal and haven't been in person in a long time.
Plus I'm not all that healthy anymore and don't think it would be a good idea to share whatever causes my vague yet persistent problems. I have no firm diagnosis, but I'm sure not in peak health.

They are all jumping on the social media bandwagon. This time it was big meanie doodie head pharmaceutical company denying dying chyld experimental treatment for antivirals.

It was explained that they are not being mean; rather, they are a very small company so research dollars are sacred. They are in the final stages but if something negative happens, it is a research setback. When the kid dies, it will set research back eons but IT COULD HELP OUR CHYYYLD.

The parents went all Facebooger and browbeat the company into submission: they said they will give the kid the drug.

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From a bottle cap message on a Magic Hat #9 beer: Condoms Prevent Minivans
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I want to pick up a bus full of unruly kids and feed them gummi bears and crack, then turn them loose in Hobby Lobby to ransack the place. They will all be wearing T shirts that say "You Could Have Prevented This."

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Presto
I've been wanting to take the little heart off my license for a long time now

Too bad there isn't an "Adults Only" box we can check next to the little pink heart.

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Presto
I read somewhere that organ donation is only really acceptable up until age 28, and that all of us over 28 are just making a PC statement by keeping the little indicator on our licenses after that.
Anybody know the truth of the matter? I've been wanting to take the little heart off my license for a long time now, I'm just a sucker for the ease of online renewal and haven't been in person in a long time.

I would think corneas for instance remain useful for longer than 28. (That's the one part of my body I wouldn't mind having donated, but you cannot pick and choose so I say no to all of it.)

Presto said, "I read somewhere that organ donation is only really acceptable up until age 28..."

Not true. The ghouls are taking them from even the elderly now.

Remember that parts of the body (though not organs) of Alistair Cooke, the famous BBC radio host, were illegally sold after his death—and he was in his 90s.

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amethyst114
God forbid if they ever get uterine transplants to work, or start harvesting eggs from dead people for the infert moos, then I'll definitely be off the donor list for good.

Eggs can be harvested from aborted fetuses for use in IVF to counter an egg shortage, http://www.dailymail.co.uk/news/article-186802/Should-eggs-aborted-babies.html

There are also other uses for these eggs better than IVF.

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navi8orgirl
They are all jumping on the social media bandwagon. This time it was big meanie doodie head pharmaceutical company denying dying chyld experimental treatment for antivirals.

It was explained that they are not being mean; rather, they are a very small company so research dollars are sacred. They are in the final stages but if something negative happens, it is a research setback. When the kid dies, it will set research back eons but IT COULD HELP OUR CHYYYLD.

The parents went all Facebooger and browbeat the company into submission: they said they will give the kid the drug.

Probably the FDA has agree on not using the data from that particular patient in the analysis. Good I say.

This child had cancer 4 times. His likelihood of long-term survival is low.

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“I was talking about children that have not been properly house-trained. Left to their own impulses and indulged by doting or careless parents almost all children are yahoos. Loud, selfish, cruel, unaffectionate, jealous, perpetually striving for attention, empty-headed, for ever prating or if words fail them simply bawling, their voices grown huge from daily practice: the very worst company in the world. But what I dislike even more than the natural child is the affected child, the hulking oaf of seven or eight that skips heavily about with her hands dangling in front of her -- a little squirrel or bunny-rabbit -- and prattling away in a baby's voice.”


― Patrick O'Brian, The Truelove


lib'-er-ty: the freedom given to you to make the wrong decision, based on the reasoned belief that you will normally make the right one.

I hope the parents were forced to sign a shit-ton of papers basically saying that since they browbeat the company so much for the drugs when the company had legitimate reasons not to, they (the parents) cannot sue and hold the company responsible for anything that goes wrong.

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