Did we talk about the 10-yr-old waiting for lung transplant?

[orangeblossom]

Jun 13, 2013 16:43:09 GMT -5 sushi said:

I had remembered reading that lung transplants don't extend life much for CF. The same underlying mucous issue will affect the next set. Although, yes, that's not enough to say they don't deserve them as the hep c liver example shows.

I'd be ok if they were going by size rather than age. 12 does seem arbitrary. But even more arbitrary is giving a transplant to a child because their parents worked the media. There's something squicky about this particular case, although I'm actually somewhat hopeful that it could cause a discussion on whether there is something that needs to be updated about the policy.

Why was she at the bottom of the adult list? Is it because of time spent on it? Or is it because there were other candidates just as critical but with better expected prognosis?

More of the latter.  She was at the top of peds,  but when going to adults would move to the bottom.

[hellfreezesovertour]

My friend got a double lung transplant in 1999. She is a CF patient, and starting to have her lung function decline. She's only 35, so soon she'll get back on the list for another set. And then, after that maybe one more. 15 years isn't a bad run, and she's gotten married and worked for most of that time.

[hellfreezesovertour]

Jun 13, 2013 17:00:14 GMT -5 mofongo said:

Jun 13, 2013 16:55:23 GMT -5 hellfreezesovertour said:

My friend got a double lung transplant in 1999. She is a CF patient, and starting to have her lung function decline. She's only 35, so soon she'll get back on the list for another set. And then, after that maybe one more. 15 years isn't a bad run, and she's gotten married and worked for most of that time.

That's definitely a success story:) I know someone who has CF and received a double, partial lung transplant from family members 20yrs ago! He is still doing great.

I also met a patient with CF who ended up needing a liver transplant, not a lung. 

We have been lucky.   Ironically, my friend is having a hard time right now, because another dear friend of ours passed at 35 of Ovarian Cancer.   Friend with CF had always assumed she would go before all our friends, and has some survior's guilt because she lived and Kelly died.  It's an odd thing to think about, but I can see how that kind of mortality would really mess with you.  I hope she outlives me!

[sushi]

mofongo, I understand the size issue and how complex that makes the transplant. What I'm saying is arbitrary is that not all 12 year olds are the same size. Some are adult size, so shouldn't they be considered with other adults?