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Pete Hooper
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Euroncrowseye wrote:
It's extremely sad, but there just aren't enough organs to go round.


According to the story, however, the doctor stated that a willing donation from a family member, if a match, wouldn't be performed either. That's got NOTHING to do with the number of organs otherwise available.
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Chuck Meeks
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nightglider1 wrote:
Euroncrowseye wrote:
It's extremely sad, but there just aren't enough organs to go round.


According to the story, however, the doctor stated that a willing donation from a family member, if a match, wouldn't be performed either. That's got NOTHING to do with the number of organs otherwise available.


THANK YOU! I tried to state this earlier but it seemed that it was ignored.
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Anthony DuLac
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Blaine
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tscook wrote:
wytefang wrote:
tscook wrote:
I'm not buying into her sensationalized and poorly written side of the story at all.


I don't think that the quality of her writing defines a story's inherent veracity. And the sensationalistic aspect of her story was obviously by necessity, so I find nothing fishy about that, either. Your points seem unfounded, from what I can see of this situation.


No, this hysteria is unfounded. Immunodeficiencies and heart problems are two very strong contraindications, this specific chromosomal defect usually has these symptoms. My points are founded while this woman's story is written to pull heart strings and is purely he said/she said. Sucks that her daughter was born with a chromosomal defect but I don't buy her story.


Each to their own - glad you're not her doctor (or mine). shake
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Pete Hooper
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Just slightly off topic, I have discussed organ donation with my loved ones, and once I'm gone have instructed them to donate any organs or tissues that can be used. I also plan to be registered this year as a bone marrow donor. Regardless of a person's views on this particular case, I encourage everyone to consider doing the same.
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Jason Farris
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wytefang wrote:

I'm not surprised to note that you're from a European country. I've come to expect that type of perspective from someone with the European background; Europe can be (at times) so progressive that they've progressed beyond the humanity of their own professions. shake But there are also some great things about our European medical counterparts that we could learn from as well, of course.


Well, I'm an American, and I think it was good that there was at least one cautious statement here. I don't know the people involved, the family, the doctor, or exactly what has been said to whom. I cannot in good conscience sign a petition with such limited and one-sided information.

And before you point the finger of blame at Europeans, you should probably look at our own American conservatives who feel it is okay to deny care and sentence someone to death (see early republican debates for the full scoop) if they decline to get insurance.

I think few people would want a child to go without care ever, no matter what their limitations are. We still don't know if my youngest son (now 2) will have normal cognitive function. He has had bizarre motor problems during development and his speech has been mildly delayed. An MRI revealed some structural abnormalities in his brain but nothing anyone can say definitively will cause any cognitive problems. We just have to wait and see. If my son needed a kidney transplant and was denied, I would fight any way I could, including contacting the ethics board, rallying local media as able and getting thorough documentation of why he was being denied. I haven no problem taking on the system.

But that does not mean I would somehow be "right" in any objective way whether I won or lost. Transplant lists as has already been noted are created by special panels. I don't have access to any statistics that say they make the "wrong" decision 20, 30, 40, or even 80% of the time. Probably because "wrong" and "right" are not black and white in these cases. The facts as they stand have been presented as a black and white. I can't help but wonder if it is as cut and dried as presented.

If my desire to have a greater understanding of a complex issue (And make no mistake, this is a very complex issue no matter how simply it was presented) before signing a petition makes me inhuman, then so be it.





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Mrs. Kristin L. Johansen
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Mountain Grove
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Poor baby girl. I signed it, and I will keep her and her family in my prayers.
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Littlemonk
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Wow. This is unbelievable! They won't do the transplant even if a family member donates the organ?? That's ridiculous!

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Joseph Tomassi
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Melvindale
Michigan
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My wife and I have both signed and forwarded this petition.

Best of luck with our prayers.
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nightglider1 wrote:
Euroncrowseye wrote:
It's extremely sad, but there just aren't enough organs to go round.


According to the story, however, the doctor stated that a willing donation from a family member, if a match, wouldn't be performed either. That's got NOTHING to do with the number of organs otherwise available.



And probably more to do with donor compatibility.

Also, if, as others have posted, her condition does come with a lowered immune system and a higher chance of heart defects, she may not be a suitable candidate for a transplant at all.
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Pete Hooper
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Euroncrowseye wrote:
nightglider1 wrote:
Euroncrowseye wrote:
It's extremely sad, but there just aren't enough organs to go round.


According to the story, however, the doctor stated that a willing donation from a family member, if a match, wouldn't be performed either. That's got NOTHING to do with the number of organs otherwise available.



And probably more to do with donor compatibility.

Also, if, as others have posted, her condition does come with a lowered immune system and a higher chance of heart defects, she may not be a suitable candidate for a transplant at all.


I'm not sure why you seem to think I don't understand that. My statement was regarding a potential matching donation from a willing family member.
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Also worth considering is the fact that these people do this every day of their lives- they have almost certainly taken all of this into account.

When it comes down to it, we seem to have the following situation:

1) A limited supply of organs, which last for a brief time before becoming unusable (making it likely that most will come from brain dead patients or living donors).

2) A large number of patients needing organs, who may share compatibility with this patient

3) A patient with poor chances of a successful transplant procedure(especially as she'll need to take immuno supressors afterwards, meaning she will lose a large amount of what immune functions she has).

4) She would, as such, be at the bottom of any such transplant list, and remain there- other people would automatically be put ahead of her as better candidates.

All in all, she has rather slim chances even if on the list. If someone were to die in a car crash and have suitable, undamaged organs desperately in need of use, then it would be very bad luck. But the majority of donors are living, sometimes brain dead. In this case, it makes sense to save the resource for a patient with better chances.
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nightglider1 wrote:
Euroncrowseye wrote:
nightglider1 wrote:
Euroncrowseye wrote:
It's extremely sad, but there just aren't enough organs to go round.


According to the story, however, the doctor stated that a willing donation from a family member, if a match, wouldn't be performed either. That's got NOTHING to do with the number of organs otherwise available.



And probably more to do with donor compatibility.

Also, if, as others have posted, her condition does come with a lowered immune system and a higher chance of heart defects, she may not be a suitable candidate for a transplant at all.


I'm not sure why you seem to think I don't understand that. My statement was regarding a potential matching donation from a willing family member.


The odds on finding a match are long, the queues of people who need to be tested and operated on are also long. It comes down to scarce resources, conflicting demands, and it is absolutely heartbreaking that it has to be this way, but until we can grow organs in a vat and transplant 100% successfully even in the worst of cases (this one does sound quite bad), decisions like this are going to be made.

What the doctor seems to say in her post is that, as someone who already has a degree of brain damage, the medication could cause even more, and having taken this into account, her quality of life would be terrible.
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Chuck Meeks
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Apparently the whole internet effort has payed off for the family. Here are some updates to the story for everyone. I will even add that the Huffington Post story goes on to say that she should not be included on a donor list but the doctor interviewed for the story said that the hospital SHOULD allow a family member to donate a kidney and if they find a match from the family there is no reason to not perform the operation. Something here for both sides of the argument.

NBC
http://www.nbcphiladelphia.com/news/health/Mom-Claims-CHOP-R...

CBS
http://philadelphia.cbslocal.com/2012/01/16/childrens-hospit...

USA Today
http://yourlife.usatoday.com/parenting-family/special-needs/...

Huffington Post
http://www.huffingtonpost.com/lisa-belkin/denying-transplant...

Edited for clarity
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T B
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Euroncrowseye wrote:
3) A patient with poor chances of a successful transplant procedure(especially as she'll need to take immuno supressors afterwards, meaning she will lose a large amount of what immune functions she has).


Doesn't everyone take immunosupressants after organ transplant? That's my understanding and experience.

CRC
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Chuck Meeks
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CapnRedChops wrote:
Euroncrowseye wrote:
3) A patient with poor chances of a successful transplant procedure(especially as she'll need to take immuno supressors afterwards, meaning she will lose a large amount of what immune functions she has).


Doesn't everyone take immunosupressants after organ transplant? That's my understanding and experience.

CRC


The problem there is that she already has a lowered immune response and taking the suppresants will make a lowered immune system almost non-existant, which would open her up to a much higher susceptibility of disease and sickness.
 
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Pete Hooper
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Komodo wrote:
CapnRedChops wrote:
Euroncrowseye wrote:
3) A patient with poor chances of a successful transplant procedure(especially as she'll need to take immuno supressors afterwards, meaning she will lose a large amount of what immune functions she has).


Doesn't everyone take immunosupressants after organ transplant? That's my understanding and experience.

CRC


The problem there is that she already has a lowered immune response and taking the suppresants will make a lowered immune system almost non-existant, which would open her up to a much higher susceptibility of disease and sickness.


And the next step will be refusing organ transplants for HIV patients, I suppose?
 
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Jason Farris
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nightglider1 wrote:


And the next step will be refusing organ transplants for HIV patients, I suppose?



Depending on the individual with HIV and how far the illness has progressed, that's entirely possible.

Your statement is wonderfully over inclusive. It's not all or nothing. It's not everyone or no one. Each individual must be assessed as an individual.

Otherwise, next they'll be refusing organ transplants to gamer geeks.
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Pete Hooper
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Never mind. Edited out original post.
 
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Robert Wesley
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While we A-L-L can become 'thankful' that Steve Jobs no longer will be "swooping down" ahead of somebody else, and getting their 'transplant' instead, JUST because he has the $$$$ to perform thus! R.I.P~"Rot in Purgatory, selfish bastard Steve Jobs!" oh, shall I also mention that HE didn't conduct 'charitable contributions' for the most parts, nor Apple, for this matter?
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