Check out the below links to learn more about Cystic Fibrosis, organ transplants and how to become and organ donor! 

Cystic Fibrosis Foundation

Transplant info

Become an organ donor

Project: Flying

Project: Flying

Before my trip to the east coast I was stuck in the hospital for two weeks and was starting to have slight anxiety about flying with needing to bring IVs with me. I already have enough trouble walking around let along carrying and pulling luggage. I also knew it was going to be difficult moving around since my lung function has dropped to 18%. So Laima's biffle Emily came up with the great idea of switching my flight to be on the same as my brothers. We were flying separate days. I also never thought to ask the airline about wheelchairs. The case management person at the hospital was helping me organize my IV stuff for the trip and was like you should really call ahead and reserve one, and so I did. Best decision ever! It would have taken us forever to walk through the airport and probably would have been late. For the IVs it was a whole box that needed to fly with me, apparently if you have luggage that is all medical supplies or medical related then you don't have to pay a baggage fee.

Paulius wasn't allowed to push me, they have transport people to do that. It was a plus for sure since we got to jump to the front of the security line and zip through the airport, I also got to board the plane first! I guess there are perks to being sick. At security though, I was not able to let them take Pablo my o2 concentrator for more than five minutes to test it for residues and such. After I went through a certain gate right by the body scan they brought me away from everyone so they could give me a nice "rub down". The nice lady explained everything they were going to do and why, before she began groping me. She wore gloves and ran her hands all over my clothes and then would wipe a little thing on her gloves and stick it in a machine to test for residue of some sort, she did the same to the wheel chair and the o2 concentrator. 

I was definitely not thrilled one bit that the flight was a red eye. I can't sleep on planes even if my life depends on it. I can maybe doze for about 15-20 minutes and then no more. I get so uncomfortable sitting in those seats. Even though Jet Blue is much better than other airlines, it's just my body that hates it. My bony butt hates it, I can't sit still! I always feel bad for the people sitting around me. Luckily, that one "somebody" sitting right next to me was my brother. But of course that gypsy can fall asleep on planes and passed out shortly after take off, so I was alone to writhe around in my seat in silence (how rude!!!). I told him he was not allowed to sleep if I couldn't sleep. I definitely took advantage that it was not a stranger next to me and put my feet up on him and then would lean on him and just move around all over. He probably will rethink saying yes to flying with me again.... #sorrynotsorry

I use to be okay with flying but the last several years it's usually a miserable experience. I also need to wear a mask the whole time. All that lovely recycled air from the plane everyone is breathing, sneezing and coughing in. Don't forget the dirty seats and tray tables! Do you know how disgusting those things are!?! Yes, I have become a germ freak and I bring hand sanitizer and disinfecting wipes with me. I wipe down all parts of my seat including the seatbelt and arm rests, the window shade and the tray table. The wipes are always very dirty after wiping everything. Apparently those tray tables have more nasty germs than a toilet! I bet next time you fly thats all you're going to think about! You're welcome :)

The time has come...

The time has come...

The Maine event

The Maine event