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laundry_queen

(8,646 posts)

40. I agree.

Thu Jul 11, 2013, 03:37 AM

Jul 2013

I think it may be extra hard for the parents in this case, because not only is CF genetic, but there is so much hope right now for a cure.

My 2nd daughter was tested for CF as an infant 13 years ago (wasn't gaining weight very fast, lung infections, messy poos) and while we were going through testing all we heard from the staff at the CF clinic was how the median age was in the 30's now and that by the time my daughter, if she had CF, was an adult there would likely be a cure. It was all very positive. I imagine these parents went through the same thing. Now can you imagine going from that to your daughter dying at age 10? It's something that's pretty rare even in the CF community. They likely weren't prepared for it.

Luckily my daughter tested negative and eventually outgrew her issues. I don't even want to begin to imagine how I'd be coping if I were in these parents' shoes.

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Pa. Girl Who Got New Lungs After Parents Sued Over Transplant Rules Develops Pneumonia [View all] Purveyor Jul 2013 OP

I hope so much that they can stop the infection. CaliforniaPeggy Jul 2013 #1

How can she survive so many surgeries? Yo_Mama Jul 2013 #21

She can still pull through. darkangel218 Jul 2013 #2

This whole story sorely pisses me off. Hulk Jul 2013 #3

Two sets...the first didn't work. dkf Jul 2013 #4

That's what I intended to say. Hulk Jul 2013 #5

Thank you for pointing this out. It's important. COLGATE4 Jul 2013 #27

Thank you for making an important point.... Rowdyboy Jul 2013 #37

Actually, from what I understand laundry_queen Jul 2013 #39

Haven't read that info anywhere. Hulk Jul 2013 #41

Maybe you need to read more laundry_queen Jul 2013 #42

Wow... RudynJack Jul 2013 #15

The first one didn't take. dkf Jul 2013 #16

Right...it didn't take "to a adolescent girl". Hulk Jul 2013 #17

weren't those rules in place before Obama became President ? JI7 Jul 2013 #8

I hate to say this, but it is likely that this child will die anyway. After all the organs Squinch Jul 2013 #29

The rules had nothing to do with the Obama administration Yo_Mama Jul 2013 #20

well there is NO reasoning with those right wing rat bastards alp227 Jul 2013 #22

Ugh! Honestly, though, lung transplants are always a long shot. nt Deep13 Jul 2013 #6

I didn't realize that. How bad? dkf Jul 2013 #7

50% of all lung transplants are dead within the first five years after the surgery. CaliforniaPeggy Jul 2013 #9

Not good. Thanks. dkf Jul 2013 #10

Which is why at 61 years of age I won't be getting one. Doesn't make sense to transplant lungs to Monk06 Jul 2013 #18

I'm so sorry to hear that Monk. The best of luck to you. Auntie Bush Jul 2013 #33

I don't mind my life has been hard but I just can't stand to see children suffer or young people cut Monk06 Jul 2013 #34

That, believe it or not, represents quite an improvement. nt Deep13 Jul 2013 #23

I'm sure it does. CaliforniaPeggy Jul 2013 #24

A friend's sister had a lung transplant. leftyladyfrommo Jul 2013 #28

Ok, so when is enough, enough? Lunabelle Jul 2013 #11

All those surgeries! That poor child. Demit Jul 2013 #12

As many as it takes ... Igel Jul 2013 #13

I can't even imagine what they must be feeling. Demit Jul 2013 #14

Well, a child should not be considered a battle field. Deep13 Jul 2013 #30

The parents may well be preparing themselves for her eventual passing Sheldon Cooper Jul 2013 #35

Yeah, hard to guess when we are not faced with that situation. nt Deep13 Jul 2013 #36

I agree. laundry_queen Jul 2013 #40

This is just horrible Sgent Jul 2013 #19

Artificial lungs? telclaven Jul 2013 #25

I think its called the Novo Lung NNguyenMD Jul 2013 #38

The MSM covered up that her 1st transplant totally failed, and she was given 2 more lungs. graham4anything Jul 2013 #26

because the MSM was part of those that was making Sebelius and Obama out to be the bad guy JI7 Jul 2013 #31

The second set of lungs were adult lungs infected with pneumonia DeschutesRiver Jul 2013 #32