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I'm a 26 year old guy with Cystic Fibrosis and...
I just wanted to thanks to everyone on this site for keeping me entertained,smiling and hopeful for the last couple years. I've been a long time lurker but decided to register for the hell of it. The stories,links and pictures have been really motivational in their own ways...waking up to hilarious ass cat pictures when you feel like shit or are sitting in a hospital bed for a few weeks does a lot for the spirit. Good on ya Reddit,Good on ya. I'm open to any questions!
daveonline2 karma
Hats off to your profession! Nurses truly are the backbone of health care and I've met some pretty bad ass nurses over the year. Kudos to you ma'm. As far as how sick...I think it really boils down on lung function(fev1's ect) and activity level(at least this is what I've observed in the community). I don't think I will have to be that bad to get a transplant so I'm optimistic :) How long have you been a nurse? What motivated you to get into the field?
rachelrainbown_n1 karma
my little brother is a carrier of cystic fibrosis, we were told if he has kids they will probably have it, so my question is do your parents have it or are they both carriers?
aspindler0 karma
I have a friend with the same illness. He is 31 and he has a baby coming in. I hope the same good luck to you.
rn-charli2 karma
Thanks for doing the AMA! I read that you may be nearing a transplant... How "sick" do you have to be before getting a lung transplant as a person with CF? In my limited experience as an ICU nurse I've only come across one patient who went on to have a lung transplant (at a different hospital because mine doesn't do them, hence the lack of exposure to them!) This patient had severe pneumonia (not CF), was on an ECMO machine (basically a bypass machine for when the lungs aren't working), and could only manage to breathe in about 10ml of air per breath (as opposed to the normal 500ml or so). Will you have to be that sick to get a transplant? I sure hope not!!!
Also, is there a chance you may need another transplant once the CF takes a hold of your new lungs?
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