Pa. girl's parents challenge lung donor rule

[PoirotryInMotion]

I am sorry, but presumably many people on transplant list are in fact desperate. Furthermore, I find it curious that mother blamed the first set of lungs for failing, and second set of lung was apparently no good either, even though they appear to be at least not rejected. Doctors stayed mum on the whole thing.

There are varying degrees of 'desperate.' Most people on the wait list, while definitely desperate in one sense, are not also in the last day or two of their life--those are the people (presently dying, on life support, etc.) that get moved to the top of the list.

But I wish you wouldn't keep getting sidetracked off the main point of my post...that one can no more say her parents caused others to die than one can say they caused others to live. The whole process is far more complex than that, and the doctors DO have a say in transplant issues (even though they've been quiet in MSM).

 

[jjenny]

There are varying degrees of 'desperate.' Most people on the wait list, while definitely desperate in one sense, are not also in the last day or two of their life--those are the people (presently dying, on life support, etc.) that get moved to the top of the list.

But I wish you wouldn't keep getting sidetracked off the main point of my post...that one can no more say her parents caused others to die than they can say they caused others to live. The whole process is far more complex than that, and the doctors DO have a say in transplant issues (even though they've been quiet in MSM).

Her first lung transplant failed within hours. Yet there were statements released claiming the surgery was a success. How was it a success when the lungs only lasted hours?

 

[PoirotryInMotion]

Her first lung transplant failed within hours. Yet there were statements released claiming the surgery was a success. How was it a success when the lungs only lasted hours?

It's my belief that the parents were overly optimistic at the outset due to both their desire for it to be a success as well as the doctors' claiming immediately after surgery it was the perfect operation and a complete success--the one time they did say something for MSM, it backfired on them. Could be that's why they've largely remained quiet.

But it's really not my desire to make a point by point defense of the parents in here to those who are obviously irritated by them.

 

[meanmaryjean]

Her first lung transplant failed within hours. Yet there were statements released claiming the surgery was a success. How was it a success when the lungs only lasted hours?

I think the parents deemed it a 'success' because they got a transplant. Period.

Again, particularly troubling is the source of nearly all info in this case is the parents, not the professionals.

 

[RabidBadger]

This story annoys me to no end. I'm an ICU nurse as well, except I work with the adult population and have worked with both donors and recipients including lung transplants. There are very valid reasons there are strict rules regarding transplants, and the results of her first transplant illustrate why. I feel for the medical teams and especially the little girl who is on the receiving end of this circus.

 

[hopingicanhelp]

What's ugly are these people who have decided that their wants and needs are greater than everyone else's and special rules should be made to accommodate them. They're going to get theirs and damn everyone else. It doesn't get much uglier than that.

:truce:
This is one of those conversations I wish we could have "offline" so proper tone is conveyed. I feel like in a written forum it's even easier to get angry because we can't see and hear the emotion coming from each other. And this is a difficult topic.

I understand two things:

a) If my child were dying, I would do everything, EVERYTHING, to prevent it, to find promise, hope, get a fighting chance -- NOTHING would stop me

b) If my child were dying and I learned that while another set of parents fought and won the chance to save their child -- a chance that was not given to MY child -- I would feel angry, desperate.

But as a parent, I can't be angry at the parents, I just can't -- angry at God, life, the system, maybe -- open it to all or stick to the rules (as medical professionals, they should know better why something is possible/viable or not).

I can't even get angry at those who try to "buy" their way up the transplant list, can't get angry at those who have the means to try alternate treatments -- again, I can get angry at the unfairness of the world, the inequality of care between the rich and poor, etc -- but not at a parent trying to save a child's life. Whoever you are, wherever you are, whatever your means you will do WHATEVER you can to save your child's life. You just will.

It's not a matter of thinking you are "better" or "above the rules". It's about being desperate and not resting until you know you've done everything you can for your baby.

 

[starry1]

:truce:
This is one of those conversations I wish we could have "offline" so proper tone is conveyed. I feel like in a written forum it's even easier to get angry because we can't see and hear the emotion coming from each other. And this is a difficult topic.

I understand two things:

a) If my child were dying, I would do everything, EVERYTHING, to prevent it, to find promise, hope, get a fighting chance -- NOTHING would stop me

b) If my child were dying and I learned that while another set of parents fought and won the chance to save their child -- a chance that was not given to MY child -- I would feel angry, desperate.

But as a parent, I can't be angry at the parents, I just can't -- angry at God, life, the system, maybe -- open it to all or stick to the rules (as medical professionals, they should know better why something is possible/viable or not).

I can't even get angry at those who try to "buy" their way up the transplant list, can't get angry at those who have the means to try alternate treatments -- again, I can get angry at the unfairness of the world, the inequality of care between the rich and poor, etc -- but not at a parent trying to save a child's life. Whoever you are, wherever you are, whatever your means you will do WHATEVER you can to save your child's life. You just will.

It's not a matter of thinking you are "better" or "above the rules". It's about being desperate and not resting until you know you've done everything you can for your baby.

This child has cystic fibrosis. She is going to die and not a dozen pair of donor lungs will change that. Reality is what it is and yes, I do think these people think they're better than everyone else. Buying their way up the list is just re-victimizing everyone else on the list, who certainly didn't ask for the situation they are in either.

 

[PoirotryInMotion]

This child has cystic fibrosis. She is going to die and not a dozen pair of donor lungs will change that. Reality is what it is and yes, I do think these people think they're better than everyone else. Buying their way up the list is just re-victimizing everyone else on the list, who certainly didn't ask for the situation they are in either.

Well, whatever you think of them, they didn't buy their way up the list. I think it's harsh to assume that without facts to base such opinion on. Their lawyer worked pro bono. And the list placement can't be bought; it's determined by the organization that oversees transplants, based on scoring which is based on many things, including urgency and location of organ donor/recipient.

 

[nursebeeme]

Folks, please remember tos when posting and do not personalize posts. It is possible to discuss the elements of this case without bashing the family as well. :nono:

 

[josie1986]

Dont really have anything to add to this but CF is a illness close to my heart. Lost my friend from it, 4years ago yesterday...not a nice illness to have, just hope this little one has the chance to do the things he never.

Sent from my GT-I9300 using Tapatalk 4 Beta

 

[jjenny]

Articles popping up claiming she is doing well or breathes on her own. None of that appears to be true. She needs additional surgery and does not breath on her own since her diaphragm is paralyzed. Meanwhile another boy with CF who got a lung transplant after her, but with lungs from a child, is out of the hospital already. Her recovery certainly doesn't appear to be progressing quickly.

"Houston, TX (WDAY TV) -- Just over a week after doctors implanted a set of lungs into Fargo's Jordan Peterson, the 10-year old walked out of Texas Children's Hospital this afternoon."

http://www.wday.com/event/article/id/82947/

 

[Charlie09]

This child has cystic fibrosis. She is going to die and not a dozen pair of donor lungs will change that. Reality is what it is and yes, I do think these people think they're better than everyone else. Buying their way up the list is just re-victimizing everyone else on the list, who certainly didn't ask for the situation they are in either.

Where is the source they bought their way up the list?
Who exactly is being victimized, much less RE victimized, lots of emotion in these posts, but little to no backup or sources.

 

[jjenny]

Adult lungs don't fit a child. Doctors have to cut them. And the lungs are likely already not in the best condition, since lungs from brain dead person are not likely to be in the best condition. There are reasons for all these rules.

 

[PoirotryInMotion]

Just to inject a few relevant facts into this thread:

1. Sarah had been at the top of the waiting list for children in her region for 18 months and was at the top prior to her mother's actions. No PR campaign put her there, no one 'bought' her position there.

2. Doctors themselves were the ones who suggested to the parents that adult lungs could be modified to fit and could save her life. It was NOT due to the family's "supporters" or the parents convincing the docs (as if...).

Sarah received lungs donated by an adult, according to Simon, meaning the lungs needed to be modified.

She has been in and out of hospitals her entire life, but her condition worsened this year. Her lungs had been deteriorating rapidly over the past few months -- much faster than anyone in her family expected. In May, doctors told her mother, Janet Murnaghan, that Sarah had less than five weeks to live.

"We knew at some point, she would need new lungs," her father, Fran Murnaghan, said in May. "We had hoped it would be much further down the road, but the disease has progressed."

At that time, Sarah had been on the waiting list for new lungs for 18 months.

The Murnaghans were under the impression that the transplant would happen any day, since she was the first candidate on the priority list for children in her region.

But children's organs rarely become available. In 2012, there were just 10 transplants in Sarah's age group, according to the United Network for Organ Sharing. Comparatively, there were more than 1,700 adult transplants in the same year. Only people 12 years and older qualified for the adult lungs.

Doctors previously have said they believe modified adult lungs could save her life.

Read more: http://www.wptv.com/dpp/news/health...0-year-old-woke-up-friday-night#ixzz2XiLaRwsW

3. Transplant success is both a combination of donor organ quality and the health of the recipient. Sarah was dying at time of transplants. Both times she received lesser quality organs than optimal--that was due to her desperate condition. If she'd not been at the brink of death, her parents probably would have not accepted those organs. That she is alive at all is a miracle, and her progress should not be compared to another child's from a far different region of the country who was fortunate to receive a rare child's set of lungs, and whose level of health may have been far different. Such comparison (apples to oranges) is not "proof" that what the doctors claimed (adult lungs could work) was wrong and rule-breaking. NO rules, in fact, were rewritten here, for those that are concerned about this.

"As the battle to save Sarah Murnaghan's life rages on, Kathleen Sebelius insists that it's not her call to change the donor rules.

While she has ordered a review of the policies, she has no plans to intervene any further."

Read more: http://www.myfoxdfw.com/story/22506...onation-fueled-by-sarahs-battle#ixzz2XiPhVdpl

The parents' taking it to court only caused an opportunity for individual case reviews for children, NOT a change to all ready written policy. Another child, as a result, has also been accepted as a potential candidate for adult lungs.

 

[jjenny]

If you get lungs from a brain dead donor, they are very likely not going to be in optimal condition.
Because the donor is brain dead. And that is the only kind of donor (brain dead) that you could get organs from. So it's kind of misleading to claim that lungs were not in optimal condition and that is the reason for difficulties, IMO. If you read about the child getting lung transplants, those lungs were far from optimal condition. In fact they were turned down by four other patients.
He is still out and walking about already.

 

[starry1]

Well, whatever you think of them, they didn't buy their way up the list. I think it's harsh to assume that without facts to base such opinion on. Their lawyer worked pro bono. And the list placement can't be bought; it's determined by the organization that oversees transplants, based on scoring which is based on many things, including urgency and location of organ donor/recipient.

Of course they did, they weren't supposed to be on the list in the first place, which they've already proven was the right thing in the first place.

 

[Bonnie Blue]

I really don't understand what the problem is with her getting adult lungs. Every time someone gets a transplant there is someone who doesn't get one, regardless of the age. When I first heard of this case her mom was saying she wanted the attention for future transplant children. In other words, her daughter could be the "guinea pig" is the way I interpreted it. If it would have been a success it would have changed everything.

 

[PoirotryInMotion]

If you get lungs from a brain dead donor, they are very likely not going to be in optimal condition.
Because the donor is brain dead. And that is the only kind of donor (brain dead) that you could get organs from. So it's kind of misleading to claim that lungs were not in optimal condition and that is the reason for difficulties, IMO. If you read about the child getting lung transplants, those lungs were far from optimal condition. In fact they were turned down by four other patients.
He is still out and walking about already.

No, one can also get donor organs from those who are being kept alive on life support (whose organs then are also being kept alive); that, in fact, is what defines optimal donor organs (in addition to specific patient criteria).

 

[PoirotryInMotion]

Of course they did, they weren't supposed to be on the list in the first place, which they've already proven was the right thing in the first place.

It would help this discussion if you could support your statements with links to facts, as posts #108 and #134 (with facts) refute what you're claiming.

 

[BuzzieCat]

Snipped for space and bold by me

NO rules, in fact, were rewritten here, for those that are concerned about this. ...

The parents' taking it to court only caused an opportunity for individual case reviews for children, NOT a change to all ready written policy. Another child, as a result, has also been accepted as a potential candidate for adult lungs.

http://www.huffingtonpost.com/2013/06/05/sarah-murnaghan-lung-transplant-_n_3392862.html

However, Baylson's ruling lifting the age requirement applies only to Sarah, at least until the hearing on the request for a broader injunction.

It would help this discussion if you could support your statements with links to facts, as posts #108 and #134 (with facts) refute what you're claiming.

http://www.nbcnews.com/health/judge-orders-girl-added-adult-lung-transplant-list-6C10213393
"It is not clear why everyone now waiting at the bottom of any transplant list would not seek relief in federal court," Caplan said. "Unless the judge has reason to think the lung distribution rules are simply a product of age discrimination and nothing more -- which seems highly unlikely -- then this becomes a troubling instance of non-doctors deciding who is the best candidate to receive a lung or other scarce medical resource."

At first the rule was just for this one little girl, and with the cameras rolling and the public thinking that it sounds cruel to deny a transplant to a child (without thinking about why those rules are in place), it definitely gives the appearance, IMO, of using the media to get the rules changed just for you.

Now the OPTN has voted to create a special review process for children under 12, and I don't have a problem with that, as that means the rule is not just for one or two people and anyone who couldn't get the media on their side is just out of luck. If there's a review process that is applied evenly, that's okay in my book. But I did not think it was fair for a judge to be making a medical decision. It was based on the media and certain politicians trying to make it look like children don't usually receive adult-sized lungs because of death panels or discrimination, when it is actually a medically-based decision that depends on a lot of factors.