Pa. girl's parents challenge lung donor rule

[eileenhawkeye]

I'd agree that media coverage (and the judicial ruling resulting from that--for not just her, but for any who would opt for a special review) effected her getting that first transplant. But Sarah got put back on the list the day after transplant #1 by her doctors--and actually got the second set of lungs 3 days after the first transplant. Media likely had little to do with it at that point--the docs put her back on the list, based on her critical condition. And, while the second set seemed to come in record time, it should also be noted that they were diseased lungs, and likely not considered optimal for those on the waiting list who were not as desperate as she was (docs said she was dying). Meanmaryjean had it right, it seems--it was an act of pure desperation as she was on life-support machines.

So how common is it for someone whose transplant fails to get another one within three days? Also, she's not the only person who is in desperate need of lungs because she is dying. I think the doctors knew they had to give her lungs or the parents would make a scene, causing the media pressure to start again.

 

[PoirotryInMotion]

So how common is it for someone whose transplant fails to get another one within three days? Also, she's not the only person who is in desperate need of lungs because she is dying. I think the doctors knew they had to give her lungs or the parents would make a scene, causing the media pressure to start again.

From what I've read tonight, it's not common at all to get a second set that fast. My take on that is that the only reason she DID get them that fast was that they were infected and considered not optimal for transplants. I get the impression the parents were so desperate they'd have probably tried a set of pig's lungs if offered them--they were told their daughter was dying. (Not faulting them, here. Desperate parents in a situation like this are a sad thing to behold.)

 

[eileenhawkeye]

It was said over and over by many people that adult lungs are not viable for a child's body. But supporters didn't want to listen. They believed that these would be "A Very Special Pair of Lungs" but nope, they failed within hours, just like experts had predicted. They basically just threw a set of lungs in the trash. What happens when the second transplant fails? I am sure she will get a third one in days too. Whatever PR team wants, PR team gets

 

[starry1]

This whole situation disgusts me. A precious gift like a good set of donor lungs wasted because of media frenzy. I hope whoever is on the adult list get together and sue the Murnaghans.

 

[eileenhawkeye]

This whole situation disgusts me. A precious gift like a good set of donor lungs wasted because of media frenzy. I hope whoever is on the adult list get together and sue the Murnaghans.

I have been wondering why we haven't heard from the family members of the people who were at the top of the list. And then it hit me: They are grieving.

 

[kaRN]

"Children younger than 12, however, do not receive LAS scores and are not part of that allocation system, Sweet said. Under the rules, they’re classified according to two categories of illness, priority one being the sickest. Kids are offered organs from donors of similar size and age before those organs are offered to older patients. That’s because children have different biological needs than teens and adults, and issues such as size and lung capacity have to be considered, Sweet said."

http://vitals.nbcnews.com/_news/201...-10-spurs-fight-over-lung-transplant-fairness

Here's a good link also. http://www.cff.org/treatments/lungtransplantation/#Why_is_it_important_to_be_a__match__for_a_transplant?


Why is it important to be a “match” for a transplant?

The person receiving the new lungs is called the “recipient.” The person donating the lungs is the “donor.” Donors must be a “match” with the recipient. A match is when enough medical and biological information about the donor and recipient are the same (for example, blood type, height, size of the chest).

The better a donor’s lungs are matched with the recipient, the more likely the new lungs won’t be rejected by the recipient’s body.

 

[meanmaryjean]

]Meanmaryjean, how common is it for the diaphragm to become paralyzed like that?[/B]

Like others, I do hope this little girl makes it. But I am very uncomfortable with the change in rules that was made for this one girl. Wat about other children, or adults, who do not have the media savvy or time/money to make such appeals to both the media and the courts?

BBM; It's not unheard of, and the repair is fairly easy. They really cannot expect the nerve to regenerate, and so what will likely happen is that the surgeon will literally 'tack' the paralyzed side to the underlying structures- thus allowing the unaffected side to pull it slightly every time it contracts. The alternate is to actually place a pacemaker on the diaphragm-(actually on the phrenic nerve, which innervates the diaphragm) but this is not something done in all parts of the country. These pacers were fairly common when I lived in Chicago- but I have not seen one since I moved to Indianapolis. None of my co-workers here have ever seen one, either. Which I find curious...

 

[kaRN]

I can't believe she got another transplant so quickly after the first set failed. Does that seem odd to anyone else? Do other transplant patients who have a failed transplant get another try again in just a few days?

ETA: I spoke too soon. No, they don't. It's very rare to get another try like she did. This reeks of favoritism and using a judge to bypass decisions that should be made by medical experts.

The parents used the media to get what they wanted and then go mum after they get what they want, IMO.

I found this interesting link on just that subject-
Allocation rules give top priority to the sickest patients, regardless of the prognosis. Distributing organs in this way is not likely to result in the best outcomes.
http://www.upenn.edu/ldi/issuebrief2_5.html

Priority for organ transplants is determined by medical urgency and waiting time. With few exceptions, organs go to those who have been waiting the longest at centers near the donor.
Those who need a second, third or even fourth transplant because their initial transplant failed often gain top priority, even though they are not likely to do as well as others who have not had a first transplant.

 

[Charlie09]

The only reason this girl got bumped to the top of the list 2x within the span of a few weeks is because of the amount of ad revenue her story brings in. I hope her parents remember to send cards to all media executives this holiday season because they are the only reason she received special treatment.

How much revenue has come in?
And who has made the revenue?
Specifics and a source please on your reason why she got bumped to the top of the list...

 

[Charlie09]

Meanmaryjean, how common is it for the diaphragm to become paralyzed like that?

Like others, I do hope this little girl makes it. But I am very uncomfortable with the change in rules that was made for this one girl. Wat about other children, or adults, who do not have the media savvy or time/money to make such appeals to both the media and the courts?

How much time and money was spent making appeals to the media and the court? Who paid for it?

 

[jjenny]

From what I've read tonight, it's not common at all to get a second set that fast. My take on that is that the only reason she DID get them that fast was that they were infected and considered not optimal for transplants. I get the impression the parents were so desperate they'd have probably tried a set of pig's lungs if offered them--they were told their daughter was dying. (Not faulting them, here. Desperate parents in a situation like this are a sad thing to behold.)

Very unusual from what I read to get a second set so quickly. First set failed, they get second within days.

 

[jjenny]

Respectfully, you don't know if anyone has died due to not getting the lungs this child did--and certainly don't know that this family has caused 4 people to die "due to their selfish whining." JMO, maybe, but I find this sort of comtempt a bit over the top. Many factors go into deciding who gets an organ, including degree of illness and tissue matching/compatability that put their child at the top for that first set of lungs. The second set she received sounds like a set that would not normally have been considered for anyone's lung transplant due to being infected with pneumonia, so one could arguably say (using your reasoning) that the M Family potentially "saved" some transplant patient from dying by accepting the diseased lungs for their own daughter.

Black and white doesn't work well in these discussions. :cow:

How did they save some transplant patient from dying by accepting the lungs? These lungs obviously didn't kill their daughter, why would they kill some other patient? Sorry, those are some strange arguments.

 

[PoirotryInMotion]

How did they save some transplant patient from dying by accepting the lungs? These lungs obviously didn't kill their daughter, why would they kill some other patient? Sorry, those are some strange arguments.

I did say using her reasoning. That being, her parents accepting a pair of lungs that would not be offered to the others on the list (due to infection) freed up a pair that would be acceptable and presumably more safe for those on the list.

I think to say her parents "saved anyone from dying" is just as much pure conjecture as "they killed four people," personally. That was my point.

 

[PoirotryInMotion]

I'm sensing a lot of negativity in this thread towards this mother. That may just be a personality issue--some people don't respond positively towards women who are aggressive, and maybe she doesn't come across well on camera. But what this mom did was, in the end, not just for her daughter. She started a campaign that, while not changing any rules, did open up an avenue for appeal for under-12 children on the wait list for available organs; an appeal based on medical need, and one which would not be age-discriminatory. As the under-12 population represents less than 10% of the people on the wait list for lungs, opening up any avenue for them for review represents a ray of hope for those parents of under-12 kids (who have very little, due to statistics. In 2012, only 10 kids got lung transplants compared to the 1700 adults who received them: http://www.wptv.com/dpp/news/health...d-responsive-10-year-old-woke-up-friday-night).

I much prefer this kind of momma to the the sort who left her 5 kids locked in a sweltering car this past week so she could go shopping. JMO...

 

[i.b.nora]

I believe there were and are medical reasons for the rules regarding transplants for those under 12 and over 12. I believe the rules should remain in place until it is or can be demonstrated and affirmed by proper medical professionals that there should be one list for all, regardless of age.

This whole thing reminds me of the Terry Schiavo conflagration.

 

[Elley Mae]

I'm sensing a lot of negativity in this thread towards this mother. That may just be a personality issue--some people don't respond positively towards women who are aggressive, and maybe she doesn't come across well on camera. But what this mom did was, in the end, not just for her daughter. She started a campaign that, while not changing any rules, did open up an avenue for appeal for under-12 children on the wait list for available organs; an appeal based on medical need, and one which would not be age-discriminatory. As the under-12 population represents less than 10% of the people on the wait list for lungs, opening up any avenue for them for review represents a ray of hope for those parents of under-12 kids (who have very little, due to statistics).

I much prefer this kind of momma to the the sort who left her 5 kids locked in a sweltering car this past week so she could go shopping. JMO...

I would be hell on wheels if it where my daughter. My husband has a kidney transplant, (sister) it was sad to see the people in the dialysis center who had other health issues and would probably never get the chance of a whole life again. Had we not been pro active and found out that we could leave that Dr. and go to another for fast transplant he would probably still be on dialysis since the center belonged to the his nephrologist he was not in a hurry for my husband to get a transplant. $$ jmo

 

[jjenny]

I did say using her reasoning. That being, her parents accepting a pair of lungs that would not be offered to the others on the list (due to infection) freed up a pair that would be acceptable and presumably more safe for those on the list.

I think to say her parents "saved anyone from dying" is just as much pure conjecture as "they killed four people," personally. That was my point.

If these lungs were offered to her daughter, than it stands to reason they would have been offered to others on the list as well. And they certainly didn't free up any pairs. Two sets of lungs were used on their child. How did they free up any lungs?

 

[PoirotryInMotion]

I would be hell on wheels if it where my daughter. My husband has a kidney transplant, (sister) it was sad to see the people in the dialysis center who had other health issues and would probably never get the chance of a whole life again. Had we not been pro active and found out that we could leave that Dr. and go to another for fast transplant he would probably still be on dialysis since the center belonged to the his nephrologist he was not in a hurry for my husband to get a transplant. $$ jmo

BBM.

I would be, too--and have been, as my kids also had special medical needs.

So glad your hubby got his transplant, Elly Mae; I'm a firm believer in proactive where it concerns loved ones' medical needs.

 

[PoirotryInMotion]

If these lungs were offered to her daughter, than it stands to reason they would have been offered to others on the list as well. And they certainly didn't free up any pairs. Two sets of lungs were used on their child. How did they free up any lungs?

They might have been offered, but it's not likely, nor is it likely they'd have been accepted by other patients, as they were considered "high-risk" for transplant, and all but the most desperate would have declined them (see link below). But, like I said, the whole argument is moot anyway, as the whole argument--from either side--is pure conjecture. That was my point--that it was ludicrous to say her parents "killed four people"--just as ludicrous as saying they "saved" anyone.

http://abcnews.go.com/Health/girl-breathing-lung-transplant/story?id=19521453#.Uc76UVNTu-E

 

[jjenny]

They might have been offered, but it's not likely, nor is it likely they'd have been accepted by other patients, as they were considered "high-risk" for transplant, and all but the most desperate would have declined them (see link below). But, like I said, the whole argument is moot anyway, as the whole argument--from either side--is pure conjecture. That was my point--that it was ludicrous to say her parents "killed four people"--just as ludicrous as saying they "saved" anyone.

http://abcnews.go.com/Health/girl-breathing-lung-transplant/story?id=19521453#.Uc76UVNTu-E

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.