Pa. girl's parents challenge lung donor rule

[BetteDavisEyes]

That's an odd way of wording it. :waitasec:
It just says "Would you like to be an organ donor, check yes or no" in Utah.
There is also ads playing while you are waiting at the DMV, encouraging people to donate...

I can barely read the tiny print on the back of my license (MI), but it says: I would like to make an anatomical gift effective on my death. There are three boxes that can be checked: all organs, all tissues (bone, eyes, other), specific organs (list). DH and I also have organ donations in our Medical Directives.

 

[oh_gal]

BBM

I don't think there is any parent who wouldn't be desperate. If she died and they hadn't tried everything they possibly could they'll feel enormous guilt. If she passes away now at least they've tried everything they possibly could. JMO



I was going to be a donor, but then they discovered the hepatitis C and that pretty much cancelled me as a possible donor. I've never been told by a doctor I can't, but I can't see how I could be.

(bbm)
My husband can't even donate blood because he lived in Europe during whatever years it was that they now find objectionable, due to mad cow disease.

Silly, I know. He's not even a cow.

 

[Linda7NJ]

Everything of mine is donated ... If I can't use it anymore.. What's the point?

Sandy Duncan convinced me to register years and years ago to become a bone marrow donor. Shocking back then it had cost me over $200. For all the blood tests and shipping and crap. That was after my doctor waived the fees for the office visit.

 

[Steely Dan]

(bbm)
My husband can't even donate blood because he lived in Europe during whatever years it was that they now find objectionable, due to mad cow disease.

Silly, I know. He's not even a cow.

BBM

Is he mad?

 

[jjenny]

I'm praying that she gets through this and lives a long time. Does anyone know if the cystic fibrosis will attack the new lungs?

Also, this reminds me of a sad story from when I worked at the hospital. A person was scheduled to get a kidney transplant and they had everything set up in the operating room and the patient was already there, I don't think they'd cut into them yet. When the kidney arrived it had been harvested so poorly the surgeon couldn't use it. That doctor was ANGRY! I can't imagine how the patients family felt. I don't know if the person ended up getting a good kidney in time or not.

It should not attack the new lungs. But she has to get bilateral lung transplant. She can not get a lobe because she has cystic fibrosis-just the lobe transplant does not work for patients with cystic fibrosis. So they will have to trim the adult lungs to fit into her.

"There are two ways to make an adult lung fit into a child. The simplest way is to trim off pieces of the lung, reshaping it to fit the child. When the adult is much larger than the child, just a portion of the adult lung - called a lobe - is transplanted into the recipient."
http://www.cbsnews.com/8301-18563_1...10-gets-adult-lung-transplant-she-fought-for/

 

[Reader]

Pa. girl's double-lung transplant deemed success

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap

PHILADELPHIA (AP) — A 10-year-old girl whose efforts to qualify for an organ donation spurred public debate over how organs are allocated underwent a successful double-lung transplant on Wednesday, the girl's family said.

Sarah Murnaghan, who suffers from severe cystic fibrosis, received new lungs from an adult donor at Children's Hospital of Philadelphia, spokeswoman Tracy Simon said.

The Murnaghan family said it was "thrilled" to share the news that Sarah was out of surgery.

"Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery," the family said in a statement.

More at 3 page article....

 

[Cubby]

Pa. girl's double-lung transplant deemed success

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap

PHILADELPHIA (AP) — A 10-year-old girl whose efforts to qualify for an organ donation spurred public debate over how organs are allocated underwent a successful double-lung transplant on Wednesday, the girl's family said.

Sarah Murnaghan, who suffers from severe cystic fibrosis, received new lungs from an adult donor at Children's Hospital of Philadelphia, spokeswoman Tracy Simon said.

The Murnaghan family said it was "thrilled" to share the news that Sarah was out of surgery.

"Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery," the family said in a statement.

More at 3 page article....

During what has been an unusually stressful week for me, this was the best news I've heard all week. It really put a smile on my face when I first heard Sarah's surgery was succesfull. I'm keeping her and her family as well as the family of the donor in my prayers.

 

[BuzzieCat]

CF affects more than just the lungs. It also affects the digestive system and sometimes even the reproductive system. It clogs everything up with thick mucus because the body lacks a certain protein. The new lungs won't have that problem but her pancreas and intestines still will.

Frankly I can't help think of the adult, whoever that would have been, who was next in line for a transplant and got bumped by this girl's parents trying to change the rules just for her. I don't like that issue to be forgotten. There aren't enough donor organs and someone who needs one will get the shaft.

 

[momrids6]

CF affects more than just the lungs. It also affects the digestive system and sometimes even the reproductive system. It clogs everything up with thick mucus because the body lacks a certain protein. The new lungs won't have that problem but her pancreas and intestines still will.

Frankly I can't help think of the adult, whoever that would have been, who was next in line for a transplant and got bumped by this girl's parents trying to change the rules just for her. I don't like that issue to be forgotten. There aren't enough donor organs and someone who needs one will get the shaft.

Enzyme Replacement Therapy for Cystic Fibrosis
Examples
Generic Name Brand Name
pancrelipase Creon, Pancreaze, Zenpep
How It Works

Enzymes help a person who has cystic fibrosis digest food by replacing digestive enzymes that are normally released by the pancreas. Pancrelipase is available in tablet, powder, or capsule form.
http://children.webmd.com/enzyme-replacement-therapy-for-cystic-fibrosis

"Sarah's family "did have a legitimate complaint" about the rule that limited her access to adult lungs, said medical ethicist Arthur Caplan, of the NYU Langone Medical Center in New York"

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap

I'm a registered organ donor in Michigan where you can sign up when you renew your driver's license. I don't know if all states do this, but I'm pleased that MI does.

Georgia gives a fee discount for all organ donors- you can register when you get a license or renew. My 5 year renewal is $ 8.00, as I am an organ donor.

 

[eileenhawkeye]

CF affects more than just the lungs. It also affects the digestive system and sometimes even the reproductive system. It clogs everything up with thick mucus because the body lacks a certain protein. The new lungs won't have that problem but her pancreas and intestines still will.

Frankly I can't help think of the adult, whoever that would have been, who was next in line for a transplant and got bumped by this girl's parents trying to change the rules just for her. I don't like that issue to be forgotten. There aren't enough donor organs and someone who needs one will get the shaft.

I think about them too. It seems pretty likely that someone else got bumped (and is possibly dead or is going to die) because this little girl's story was considered newsworthy enough. I guess whoever gets the most publicity gets the lungs.

 

[MsFacetious]

Some rules need to be changed. Some rules are not fair.
If they didn't change we would still have slaves, segregated drinking fountains and only men voting.

I know a woman with CF who has had TWO double lung transplants in FIVE years. No publicity.

However, many people agree that kids with CF, disabled kids, disabled adults shouldn't be eligible.
That those good organs shouldn't be wasted on people with other things going against them.

That is why MY precious, amazing daughter will never be eligible for a transplant.
Because she is "disabled" or "defective" or "not good enough" to get one.

We give transplants to babies all the time, who cannot take care of themselves.
However, "cannot manage care themselves" is used to deny someone with Down syndrome a transplant.

It's all a matter of perspective. My daughter has done more good in her life than many adults I know.
My daughter has saved and changed lives. Her drug addicted hooker aunt got a liver transplant. :banghead:

Some people think a black person, gay person, or person with a criminal record, should not be eligible.
Everyone has a different opinion of what "worthy" is. :twocents:
I just hope and pray that I never again have to fight to prove my daughter is worthy of life. lease:

 

[momrids6]

Some rules need to be changed. Some rules are not fair.
If they didn't change we would still have slaves, segregated drinking fountains and only men voting.

I know a woman with CF who has had TWO double lung transplants in FIVE years. No publicity.

However, many people agree that kids with CF, disabled kids, disabled adults shouldn't be eligible.
That those good organs shouldn't be wasted on people with other things going against them.

That is why MY precious, amazing daughter will never be eligible for a transplant.
Because she is "disabled" or "defective" or "not good enough" to get one.

We give transplants to babies all the time, who cannot take care of themselves.
However, "cannot manage care themselves" is used to deny someone with Down syndrome a transplant.

It's all a matter of perspective. My daughter has done more good in her life than many adults I know.
My daughter has saved and changed lives. Her drug addicted hooker aunt got a liver transplant. :banghead:

Some people think a black person, gay person, or person with a criminal record, should not be eligible.
Everyone has a different opinion of what "worthy" is. :twocents:
I just hope and pray that I never again have to fight to prove my daughter is worthy of life. lease:

Thanks Ms. F: My son is not eligible either. His brothers are- only because I refuse to let them do a MtDNA panel on the them

 

[eileenhawkeye]

The rules only changed for this one child. The rules haven't changed so now everyone shares the same list regardless of age. She got special treatment because her story was appealing to the national media. Someone died because their story wasn't. What about the other children on the children's list? Do their parents now all have to start suing and screaming to the media so they can get on the adult list too?

 

[Linda7NJ]

The rules only changed for this one child. The rules haven't changed so now everyone shares the same list regardless of age. She got special treatment because her story was appealing to the national media. Someone died because their story wasn't. What about the other children on the children's list? Do their parents now all have to start suing and screaming to the media so they can get on the adult list too?

The media could be instrumental in getting more donors to sign up. They need to cover adults waiting, children waiting and how many die waiting. Introduce the public to some waiting at the top of the lists... Their families, children... Etc. and how many could be saved if only there were more donors.

All IMO

 

[Steely Dan]

Did they get the rules bent for themselves or are they getting the rules reviewed for everyone. It appears that one person with a say believes it's unfair.

This isn't easy to answer and I've been trying to stay out of it til now. I see the points on both sides. If the lungs have to be made to fit, then maybe they should go to someone who needs them and doesn't need them trimmed. If there are lungs available that could be used for this little girl, then why should she be passed over?

So in the past the rules were written one way. It seems to me that they were "one size fits all" rules. It's not that easy. It should be up to the doctor to make a case on an individual basis. Then they should be compiled. It appears that the lungs she got are working now so it appears the "make them fit" worked for this kid.

Did someone more deserving get jipped by her getting these lungs or was she being treated unfairly. We'd have to know every case that got lungs before her once she entered the list and then look where those lungs would have gone if she hadn't gotten them.

This is judgmental, but it's how I feel. If someone destroyed their lungs by smoking for fifty years, I don't feel that bad. If the person who missed out on these lungs was a person who had children of their own, were in the prime of their lives and had lung damage that wasn't in any way shape or form due to their negligence then I feel bad.

Too often adults are overlooked in the disease contributions. Who doesn't want to help a kid with cancer? Well, let's say there is a father with three kids and his income is vital to his families necessary survivability. Shouldn't he be the focus. This is very callous, but when making those determinations you have to look at need. Who is more needed by their family? If I was given the ability to cure a kid with cancer or a man with three kids. I'd choose the man with three kids.

We'll probably never know who would have gotten those lungs ahead of her. So there's nothing we can do. It's a very hard thing to parse out and both sides can leave this debate feeling cold.

 

[momrids6]

Did they get the rules bent for themselves or are they getting the rules reviewed for everyone.

RSBM/BBM:
Its executive committee held an emergency meeting this week but resisted making emergency rule changes for children under 12 who are waiting on lungs, instead creating a special appeal and review system to hear such cases.

"When the transplant community met, they didn't want to change that rule without really thinking carefully about it," he said. The appeals process that was established this week, he said, was "built on evidence, not on influence."

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap

 

[BuzzieCat]

Enzyme Replacement Therapy for Cystic Fibrosis
Examples
Generic Name Brand Name
pancrelipase Creon, Pancreaze, Zenpep
How It Works

Enzymes help a person who has cystic fibrosis digest food by replacing digestive enzymes that are normally released by the pancreas. Pancrelipase is available in tablet, powder, or capsule form.
http://children.webmd.com/enzyme-replacement-therapy-for-cystic-fibrosis

"Sarah's family "did have a legitimate complaint" about the rule that limited her access to adult lungs, said medical ethicist Arthur Caplan, of the NYU Langone Medical Center in New York"

http://www.centurylink.net/news/rea...p-pa_girl_who_took_on_organ_donor_rules_ge-ap



Georgia gives a fee discount for all organ donors- you can register when you get a license or renew. My 5 year renewal is $ 8.00, as I am an organ donor.

Cystic fibrosis can cause diabetes too.

I just hate the idea that difficult medical decisions like who is going to receive an organ from a limited donation pool might now be made based on how cute you are, how much attention you can drum up, possibly how much money or influence you might have, how much of a political scene you make, etc., rather than fair, established rules that are the best they can be in an imperfect world and are applied evenly and not changed for a few select people. I don't have a problem if knowledgeable transplant experts look at the rules and decide there needs to be a change, but I do have a problem with changing the rules only for certain people. Any change needs to be agreed upon by experts and applied as fairly as possible, NOT based on influence or cuteness.

 

[Steely Dan]

Cystic fibrosis can cause diabetes too.

I just hate the idea that difficult medical decisions like who is going to receive an organ from a limited donation pool might now be made based on how cute you are, how much attention you can drum up, possibly how much money or influence you might have, how much of a political scene you make, etc., rather than fair, established rules that are the best they can be in an imperfect world and are applied evenly and not changed for a few select people. I don't have a problem if knowledgeable transplant experts look at the rules and decide there needs to be a change, but I do have a problem with changing the rules only for certain people. Any change needs to be agreed upon by experts and applied as fairly as possible, NOT based on influence or cuteness.

They're parents. They don't want to lose their daughter. A LOT of parents would do anything to keep their kid alive. I don't blame them. JMO

 

[Confusion]

They're parents. They don't want to lose their daughter. A LOT of parents would do anything to keep their kid alive. I don't blame them. JMO

It also didn't sound like they were letting her bump someone worse off than her from the list. My understanding is that it is based on who needs it the most and is compatible. I'm just glad it all seems to have gone well.

 

[jjenny]

She did get new lungs. But she still has the same defective gene for the rest of her body. We are also not talking about her being cured and having a normal lifespan after this procedure.
Average survival duration is 3.4 years after the lung transplant for children with cystic fibrosis.

"In a 2007 study, researchers at the University of Utah examined the risks and benefits of lung transplants for cystic fibrosis patients. They looked at 514 children with cystic fibrosis on the waiting list for a transplant, including 248 who did receive a transplant. Less than 1 percent of the transplant patients benefited from the procedure, the researchers concluded."

http://news.yahoo.com/lung-transplants-controversial-cystic-fibrosis-patients-140058226.html