10 year old girl denied transplant lung..to young by two yrs

[Jaguar]

Jun 5, 2013 20:13:06 GMT -5 The Captain said:

mmhmm or anyone else with a medical background...

I'm really confused about this case - the articles quote her doctors as saying her prognosis with a transplant would be excellent .  However I thought Cystic Fibrosis was genetic and chronic and would cause her body to attack the new set of lungs the same way the old set was attacked (she's near death after only 10 years).

Is a life extension of 10 years with a sentence of deterioriating health considered an excellent prognosis.

Honestly, what am I missing?

Her parents don't want her to die and doctors are filling her with crappy hope. Lung transplant won't cure her CF.

My personal view of this is let nature take it's course. I have a genetic blood disorder and all my family were told I would not reach life expectancy beyond my teens. I'm 50 now, so much for their prognosis on my life expectancy.

[mmhmm]

I don't think you're missing anything, captain.  CF is genetic, and chronic, and a disease that causes secretions to thicken to the point they block passages, not only in the lungs, but in other body organs, as well.  The pancreas is often involved, and sometimes the liver.  There is no cure.  How in the heck anyone could come up with an excellent prognosis for a child with CF is beyond me.  Average expected life span is less than 40 years, at this time.

[Jaguar]

This child's chances are nil to none. I think bringing this circus into her life was really cruel. And she and her family have been filled with false hope.

[thyme4change]

Jun 5, 2013 19:47:39 GMT -5 Cookies Galore said:

Jun 5, 2013 18:50:58 GMT -5 thyme4change said:

I found it interesting that the judge only gave her a 10 day ruling.  So, are the parents just sitting around hoping someone gets in a bad accident today.  Ugh!  Is the 10 days so someone has the time to change the law?

Well, two people did die in that building collapse earlier today in Philly.

Yipee!  I hope their organs weren't crushed, or their lungs filled with crap from the building.

---

I do remember seeing a story on TV about a teenager that had died in a car crash, and they were talking to the mother.  She said that the only good thing that comes from having your son die at a young age is that they were able to take a lot of his organs, and I think she said they went to 6 other kids, or something?  She said that she asked them if every year if they could send her a Christmas card and a picture.  So her fridge was covered with all these people who were alive because her son died.  

[Angel!]

A transplant could get her 10 or 20 more years.  That doesn't seem like a waste for someone to double or triple their lifespan. 

I disagree with false hope.  If I was 10 and dying, then I would both want my parents to do everything they could to save me & would want to believe I have a chance.  I disagree that the rules should be changed for her, but think her parents are doing the right thing fighting for her.  Plus, as a parent I wouldn't feel right if I didn't do something to try to buy my kid another few decades on the planet. 

I will have to ask my friend about false hope, she works with very sick or dying children, so she would have more insight into how kids handle this stuff.  One thing she has told me is that those kids usually have a much better ability to handle this stuff than adults giving them credit for.  That a kid that has been sick most of their life & knows they might die early has a very different, much deeper perspective on the world than even many adults.  She is often in awe of the kids she works with because of this.  Personally, I think she has the hardest, suckiest job in the world.  But, I am so happy there are people out there that can do this because the kids and parents need someone like her.

[fairlycrazy23]

Seems like there are two different issues, the first is simply should children under 12 automatically be excluded from the adult transplant list , and to this I would say no.

The second concerns giving organs of any kind to adults or children who are terminal, in this i'm not sure; is there existing rules about how long they would have etc..

If an organ was available today and even if she received the organ she would only live another month, I think most would agree that the organ should go to someone else; But what about 5/10/15/30 years? what would be the cut off? I guess it could also depend on quality of life for those years.
This I don't really know and am glad I don't have to make those kind of decisions.

[wyouser]

There was discussion this am on Fox about these rules. Indication was over 60% of chidren die because of the age thing and waiting for an organ. For adults the mortality is around 28% If bureaucracy sets rules with these results....are all folks waiting receiving due process? Are all being treated equally? I suspect the numbers of questions concerning this sort of thing may skyrocket as the new healt regs phase in???

[Angel!]

Jun 6, 2013 15:13:05 GMT -5 wyouser said:

There was discussion this am on Fox about these rules. Indication was over 60% of chidren die because of the age thing and waiting for an organ. For adults the mortality is around 28% If bureaucracy sets rules with these results....are all folks waiting receiving due process? Are all being treated equally? I suspect the numbers of questions concerning this sort of thing may skyrocket as the new healt regs phase in

More kids die waiting simply because there are less donors.  A 4 year old simply cannot take an adult heart & not that many young kids dies compared to adults each year.  This isn't due to unfair bureaucracy.

[Angel!]

I am curious as to the likelihood of her being a match in the next few weeks even on the adult list.  I know a ton goes into matching donors.  My mom used to do this - it takes 24-36 hours to run all the tests (she would sleep at work those days) & you look at something like 10-20 different items.  It isn't just a blood type match, there is much more to it than that.  And if you don't get it right, the body will reject the transplant.

So it stands to reason that someone with some rarer RH negative antigens might be waiting a very long time, and on the flip side a lung with a rare positive antigen might actually get thrown out.  I'm curious at to the stats on this stuff.

[wyouser]

It may be more to the point that a regulation simply exists and has bureacracy to apply it. Case in point. (NOT in health care) If you have a cdl license it is a new rule that you have a complete up to date book of regulations. You will be fined if you do not. These regulations are updated continually And the Fed cannot get you the updates for approximately 90 days after they go into effect. Hence we have a regulation for which YOU WILL BE FINED for having an out of date regulation book which will be always 90 days OUT OF Compliance.The point being, we have a regulation...we have a bureaucrat. The regulation says blah blah blah. We must follow the regulation. Have you ever read anything by Kafka?

[fairlycrazy23]

www.foxnews.com/health/2013/06/12/girl-dying-cystic-fibrosis-to-receive-lung-transplant-today/

[The Captain]

"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."

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

Yea, I saw that.  Nothing like letting emotions rule over fact  and sentence someone who actually had a shot at life to death instead.

[djAdvocate]

Jun 12, 2013 13:04:22 GMT -5 The Captain said:

"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."

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

Yea, I saw that.  Nothing like letting emotions rule over fact  and sentence someone who actually had a shot at life to death instead.

is this another one of those "the government is killing our babies" stories?  how droll.

[The Captain]

DJ - I'm not sure I understand your comment.

What do you mean?

[thyme4change]

I'm sure the #2 guy on the list is so happy for this girl.

[mmhmm]

Jun 12, 2013 13:18:26 GMT -5 djAdvocate said:

Jun 12, 2013 13:04:22 GMT -5 The Captain said:

"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."

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

Yea, I saw that.  Nothing like letting emotions rule over fact  and sentence someone who actually had a shot at life to death instead.

is this another one of those "the government is killing our babies" stories?  how droll.

No.  Actually, it's sorta the opposite.  Since cystic fibrosis is a chronic, incurable condition, the article is looking at the issue of the value of a lung transplant being given to someone with this condition, considering the condition is known to result in organ destruction/failure (primarily the lungs, but also the pancreas, liver, and digestive system).

[deziloooooo]

As a update to this story..just read that the little girl is getting a double adult transplant lungs  as I type or it may be done..Not going to comment on the correctness of the decision as I will leave it up to those who actually make those decisions over the psudo experts we seem to have here...the article posted bvelow seems to cover all the basis..

news.yahoo.com/pa-girl-took-donor-rules-gets-adult-lungs-175740282.html;_ylt=AuYe.wGeJ0xvbETo3z3ziS0JVux_;_ylu=X3oDMTI5dGFidThmBG1pdANBVFQgMyBTdG9yeSBKdW1ib3Ryb24gSG9tZSBDYWNoZWQEcG9zAzQEc2VjA01lZGlhQXR0V2lkZ2V0cm9uQXNzZW1ibHk-;_ylg=X3oDMTFkcW51ZGliBGludGwDdXMEbGFuZwNlbi11cwRwc3RhaWQDBHBzdGNhdANob21lBHB0A3BtaA--;_ylv=3

[mmhmm]

I haven't seen any "psudo (sic) experts" make any decisions here, dezi.  What I've seen is people discussing the ramifications of all aspects of this particular case, and others like it.

The article to which you've linked is a good one, but it doesn't "cover all the basis (sic)".  It leaves out any mention of the existence of a chronic, fatal disease in the recipient of donated lungs.

[Shooby]

  This is a very difficult thing.  But, i think the rules of this should be left in the hands of the medical professionals to sift and sort out and establish guidelines while continually reevaluating current guidelines and research.  I don't believe the govt or a judge should be stepping in to circumvent a well established process.

[mmhmm]

Jun 6, 2013 10:24:11 GMT -5 Angel! said:

A transplant could get her 10 or 20 more years.  That doesn't seem like a waste for someone to double or triple their lifespan. 

I disagree with false hope.  If I was 10 and dying, then I would both want my parents to do everything they could to save me & would want to believe I have a chance.  I disagree that the rules should be changed for her, but think her parents are doing the right thing fighting for her.  Plus, as a parent I wouldn't feel right if I didn't do something to try to buy my kid another few decades on the planet. 

I will have to ask my friend about false hope, she works with very sick or dying children, so she would have more insight into how kids handle this stuff.  One thing she has told me is that those kids usually have a much better ability to handle this stuff than adults giving them credit for.  That a kid that has been sick most of their life & knows they might die early has a very different, much deeper perspective on the world than even many adults.  She is often in awe of the kids she works with because of this.  Personally, I think she has the hardest, suckiest job in the world.  But, I am so happy there are people out there that can do this because the kids and parents need someone like her.

One thing to think about, Angel, is that two lungs are being used for this child.  That's two waiting recipients who won't be getting a lung.  Let's take a hypothetical:  We've got a young man in his twenties who needs a lung, and a woman in her thirties who needs a lung.  Both are otherwise healthy and can expect to live a normal lifespan if a lung is replaced.  Both have families with young children who depend on them.  Also needing a lung (in this case, two lungs) is a child of 10 with CF, whose lifespan is limited to mid-thirties by her disease.  It's something to think about, as far as I'm concerned.

[Tennesseer]

mmhmm-I remember not that long ago when double lung transplants were going to occur (is there such a thing as a single lung transplant?), that it usually ended up being a double lung and heart transplant.  The lungs apparently had a better chance of not being reject if the heart was also included.  

Do they no longer include the heart in these lung transplants?  Or am I thinking of a different type of medical transplant that involved the heart and another organ(s).

[The Captain]

mmhmm - I thought those criteria you mentioned were taken into consideration when assigning "points" to those on the waiting list; which is why I was surprised she moved to the head of the adult line.

Wait, the only factor considered in terms of long term mortality is if the patient is expected to survive at least a year.

That's pretty messed up IMHO when there is such a drastic shortage of resources. 

optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_9.pdf

[mmhmm]

In some cases, a heart is transplanted with the lungs, tennesseer, but lung transplants alone are also done.  A lot depends on the condition causing the requirement.  If the heart of the recipient is in good shape, there's really no reason to "fix what ain't broke".  Lung transplants, however, are definitely high-risk - mostly to do with infections and rejection.  The immuno-suppressive medications that must be taken long-term after an organ transplant have their share of unpleasant effects, as well.  That said, a double lung transplant patient has a better outlook than a single lung transplant.  I think the current survival rate is around 50% for six years.

[Tennesseer]

Thanks.

[EVT1]

Jun 12, 2013 16:27:49 GMT -5 Shooby said:

  This is a very difficult thing.  But, i think the rules of this should be left in the hands of the medical professionals to sift and sort out and establish guidelines while continually reevaluating current guidelines and research.  I don't believe the govt or a judge should be stepping in to circumvent a well established process.

I agree with you- the courts or politicians should not stick their heads in this.  No matter what rule is devised, what criteria is used, there is going to be death and a grieving family.  Of course everyone wants an exception- I would want an exception for my child- anyone would.  An arbitrary age seems dumb- but maybe there is more to that- there has to be- or maybe there should be- if it is a child-adult issue then would not a chest xray and size make more sense as a dividing line between adults and children?  I have no idea how this works but I would like to think the professionals devised this to have the best results.

[deziloooooo]

Jun 12, 2013 16:03:50 GMT -5 mmhmm said:

I haven't seen any "psudo (sic) experts" make any decisions here, dezi.  What I've seen is people discussing the ramifications of all aspects of this particular case, and others like it.

The article to which you've linked is a good one, but it doesn't "cover all the basis (sic)".  It leaves out any mention of the existence of a chronic, fatal disease in the recipient of donated lungs.

I did a quick count and found so far about seven posters criticizing in some way the familys desire to have their kid considered for a transplant..it seems the big thing there is the age difference..strong # of 12 years old , no wavering thus leaving off any 10 or 11 years old..that seems to be the big question and what they are asking...then let the chips fall where they may it seems , decision to be made by qualified personnel..and the criticism is heavy against the parents here...

My feeling? Are you out of your mind?..Parent is just supposed to sit back and not fight for their kid..? Especially when in a age limitation, who knows what is the correct answer..what parent wouldn't look to get their kid a break??  

Looks like so many who are members here believe one should not fight for their child..., especially in a life and death situation...I don't believe that would really be the case however..believe all would be doing everything with in their power to get help for their kid...

This is another point I disagree with you on mmhmm and have held off from commenting to you on your posts..last time I disagree with you  as a POSTER...not a moderator..I don't criticize publickly moderator decisions..you posted a couple of zingers to me..one of them..

"
* I suggest you read the CoC for this message board, Dezi. It specifically states where you are to address your complaints. Further posts along this line will be deleted and the specifications noted in the CoC will be applied. - mmhmm, Administrator


when there was no attack or criticism made against you as a moderator..just not agreeing with your post as a poster..{Yes, I took your advice after sleeping on it..went to another source and they agreed with me..suggested not to make a big deal about it and we move on..however, it does keep one from wanting to test those waters again..as in the above..leery on disagreeing with a moderator...really don't need the BS of zingers or worse coming down on one head..}

[mmhmm]

I see nobody here who has said parents should not fight for their children, dezi.  Not one poster has said anything like that.  Not one.  You're reading something into posts that just isn't there.

As to "zingers" ... I seem to remember you saying on more than one occasion you really like those.  Of course, you were talking about "zingers" you threw at others.  It must be different when you think a "zinger" is being thrown at you, eh?  My comment wasn't a "zinger".  It was advice, and would be good advice to take.

[zibazinski]

I'm sorry but someone with a terminal illness should not even be on the list for organ transplants.

[deziloooooo]

Jun 13, 2013 17:13:15 GMT -5 mmhmm said:

I see nobody here who has said parents should not fight for their children, dezi.  Not one poster has said anything like that.  Not one.  You're reading something into posts that just isn't there.

As to "zingers" ... I seem to remember you saying on more than one occasion you really like those.  Of course, you were talking about "zingers" you threw at others.  It must be different when you think a "zinger" is being thrown at you, eh?  My comment wasn't a "zinger".  It was advice, and would be good advice to take.

zingers are fine....when done fairly...however...remarks construed as threats, muted over , overt..as the last one you just posted..."It was advice, and would be good advice to take."..those are another thing entirely...

Anything else to say would be against the C of C as you construe it so I am bowing out and leaving the field to you...be free to go at it..for me....
Ciao

[Value Buy]

Jun 6, 2013 10:24:11 GMT -5 Angel! said:

A transplant could get her 10 or 20 more years.  That doesn't seem like a waste for someone to double or triple their lifespan. 

I disagree with false hope.  If I was 10 and dying, then I would both want my parents to do everything they could to save me & would want to believe I have a chance.  I disagree that the rules should be changed for her, but think her parents are doing the right thing fighting for her.  Plus, as a parent I wouldn't feel right if I didn't do something to try to buy my kid another few decades on the planet. 

I will have to ask my friend about false hope, she works with very sick or dying children, so she would have more insight into how kids handle this stuff.  One thing she has told me is that those kids usually have a much better ability to handle this stuff than adults giving them credit for.  That a kid that has been sick most of their life & knows they might die early has a very different, much deeper perspective on the world than even many adults.  She is often in awe of the kids she works with because of this.  Personally, I think she has the hardest, suckiest job in the world.  But, I am so happy there are people out there that can do this because the kids and parents need someone like her.

Forty years ago, open heart surgery let alone, a heart transplant in a 65 year old was a crapshoot, and if you lived five years, it was a rousing success, and no one thought it was a waste of a good heart in an old sick person to extend their life five years.
On top of this the quality of life after the transplant was not that hot either. Medicine has come a long way since then.
If the child's life would be extended five to ten years, I vote, yes.