there are very few people who are good at waiting. patience isnt a quality thats commonly found, especially in todays world things are so fast. traffic, slow Internet, people strolling down a sidewalk can put a city walker into a rage! waiting for your food at a restaurant or for a package to come in the mail is almost anxiety inducing to some......can you imagine waiting for a new organ??

ive never been a patient person, i drive too fast when i have nowhere to go. im not in a rush to get groceries but i speed down higgins like my life will end if im stuck behind that prius for one more second. i dont know why im in such a rush. when my facebook doesnt load fast enough or my food takes too long to cook its awful to me, and ive spent the last year of my life waiting for my phone to ring telling me that there is a pair of lungs waiting for me. waiting for someone to tell me my life will never be the same because i will live longer and have a more fulfilling life.

however ive just received news im too sick at the moment to receive this call. i was put on hold until my meds are lowered and my multiple infections are under control. this is a crushing blow for an inpatient patient.

when you cant work or go to school theres not a lot to do with your day. i spend a lot of time sitting in different spots around the house, reading, watching bad tv, watching good tv when luck has it, waiting for friends who have real lives to get off of work and hope they have a free night to hang out. ive began going ot church more for the community and social interactions and structure than the religion, looking for classes that dont cost and arm and a leg that i can take to get me out of the house.

im waiting and thats all i can do. i cant make my lungs or my other organs cooperate like id like them too all i can do is hope for the best and its beyond a doubt the most difficult thing ive ever had to do. knowing now that i dont even have hope for that call to come in (at least not right now, ill get back on that list im very determined to do so and these are just infections, they can be treated!) its even harder. it drags the wait on and it prolongs the anxiety.

i admire the people currtently waiting and the ones who have gone through the wait. this is no easy task and those who have to experience it have strength in them like nothing else. ill be here hoping for the best, but a little crushed at the moment.

Orkambi and Health Update

The last time i was at transplant clinic i talked to my doctor about how well my lungs were doing without the bronchial valves i had to fix my recent lung collapse and we agreed that if i can get my lung function over 30% then i can go on a hold from the transplant list. Well my next appointment is in March but 3 days ago at my regular clinic I blew a 31%!!! (i only got above 30 for one out of 3 but it still counts!!) I am beyond excited with my progress! From breathing with one lung to possibly going on hold, from about 105lbs to 124lbs, im kicking ass left and right!!

Blowing away the docs!!! (pun intended!)

Except for the past few days....Ive officially begun taking Orkambi. The newest drug to come out for CF. While all the studies were done with people over 40% lung function, some with lower numbers have still seen results. People warned me the side effects were brutal in the first few weeks and they werent kidding. Sweats, chest tightness, shortness of breath, body aches, coughing up an amount of mucus that i didnt even know could exist in a single body, no sleep, and lower effectiveness with my anti anxiety, anti depressants, and sleep meds. Luckily i felt only half as bad as day 2 so im pretty confident i lucked out on the side effects front!!! For a shot at even healthier lungs i can handle this but i am scheduling an admission in the next week for a tune up. I havent been feeling the best and i wanna catch it while its early so it doesnt turn into anything more serious.

Feeling Orkambi at its worst!

All in all im doing really well thanks to a new diet, lots of exercise and workouts, and being on top of my meds and airway clearance every day. After the side effects wear down and im done with iv's theres no telling what my numbers will be, but im pretty confident in this new med and myself and when March rolls around ill be ready!

Post Transplant Thoughts and Ramblings.......

Ive always loved open space, feeling like the only person for miles and miles, being in the middle of nature without a single man made noise. My favorite vacations were cabins in the woods where my days were spent hiking and kayaking, sitting on a porch eating dinner watching the sun go down over mountains and tree tops. I love waking up to foggy mornings next to a lake, drinking coffee and hearing nothing but birds. Tonight the dumbest thing happened i was watching X-men Origins : Wolverine and for some reason when it showed his house in the mountains, i got this pang of sadness. My life now consists of being in one spot, near my transplant center, constantly running to appointments and hospital stays. Im connected to my phone at all times in case "the call" comes in or i have an emergency and need to call an ambulance. At times im conflicted over transplant because i feel like it could be too early, like im still healthy enough to keep these lungs for a long time, but then times, like right now, i want new ones so badly, i want that life i love so badly. I want to hike and run and feel free. My oxygen cords are like a ball and chain and i wanna break away from them but i cant. These last few years ive tried to do all the traveling i could because i knew this was coming and as much as i did i still want more!! I cant wait for the day i drive away and stay away for a significant amount of time!!! I love my family i could never leave them for too long but my number one post transplant goal is to live somewhere new, on my own, for at least a few months. I wanna explore a new place and experience new things!!! Its so weird how that one scene got to me so badly hahaha i feel so stupid but sometimes the dumbest things really make ya think!!

If you got a second chance at life, where would you go? what would you do with it? would you wait till you were cleared to go back to your job and keep your life how it is or would you go off for a while? live out a dream for a little while?? Im so excited at the prospect of a new fuller life right now! Terrified....but excited.

brb daydreaming of new lungs, and new life.