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[lonesomepioneer]

Okay okay. Proper update.

Comments

[polyhymnia]

Really glad everything continues to go well and that you have an Awesome Nurse. :-D

That thing about the hacking and the burning does sound really awful. Yikes. It's odd to think that Jeremy's old lungs are now biohazard waste.

Is all the extra-special cleaning stuff just for a while after the transplant or will it be a permanent thing?

[lonesomepioneer]

Well, we're going to have to be careful forever, because he'll be on some level of immunosuppressants forever to keep the body from attacking the new lungs, but as the body gets used to the new lungs, he'll gradually be taking fewer immunosuppressants and we'll have to be less careful. Like, eventually we can eat in a restaurant, as long as there aren't a lot of people there and everything we eat is very thoroughly cooked. But no salad bars, pretty much ever again. :P

[polyhymnia]

Well, lately it seems like none of us should be eating in salad bars anyway. Not the spinach at least!

I figured there would be some permanent stuff (I used to read a lot of Lurlene McDaniel books about kids with cancer and transplants -- did you read those?), but I wasn't sure which stuff was temporary and which was permanent. I didn't really think about restaurants or salad bars. Wow.

[lonesomepioneer]

Hee, no, I never read any Lurlene McDaniel-- I should have, it would have prepared me more for all this. But yeah, we just have to be very very careful of germs, because his body's ability to fight them off is so compromised. Everything has to be pasteurized and either cold or hot, nothing tepid. No sushi, etc. He wears a mask out anywhere where people are likely to breathe on him, and we carry around Super Soakers filled with antibacterial gel to shoot at any snot-nosed kids who attempt to approach us. ;)

[mcausland]

It's all pretty fucking amazing.
The concept of hospitals as places that actually cure people is sort of a recent development in my head.
Lung transplants for CF patients is a quite new thing too, isn't it? I thought I read that somewhere...

[lonesomepioneer]

Frankly, it's pretty amazing to us too. The hospital back in North Carolina was so worthless, I can't even tell you. Jeremy was being seen by a pediatrician, because the adult CF doctor had quit, and they lost his lab test results, and screwed up his IVs whenever he was inpatient unless he stayed up all night to watch them. Much as I gripe about living in Florida, this hospital has been a revelation in terms of quality of care and, you know, actually fixing things.

Lung transplants just came into their own, apparently, as far as people getting them when they need them, and them working. And until recently CF pretty much meant you'd never see your fifteenth birthday, so yeah. All this is very new and awesome.

[incidentist]

Good to hear, all of it. Even the gunky nasty bit, because it seems like they did that part well, which is good.

[philthecow]

That's really exciting that you have awesome doctors and nurses--how long will it be before you go home home, away from the hotel?

[lonesomepioneer]

A couple of months still, at least. He has to go in for daily appointments for awhile. But at least we're not waiting anymore. :)

[electricmonk]

Did you see this article? I imagine it's full of things you already know, but it was interesting to me, especially considering that I didn't even know they could do lung transplants until I heard about Jeremy. I half expected an interview with him in the article. ;)
Glad to hear you guys are doing well!

[lonesomepioneer]

Thanks for that article-- you and barilosopher sent it to me almost simultaneously! That's quite interesting. And there are quotes from two North Carolina doctors. Represent! :)