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!

Hospital Stays

When i start really feeling bad i know the best thing for me is to call my doctor and set up an admission, but i still fight it. Every single time! Not because i dont want the pain of all the blood draws, ivs, picc lines, and everything else they do. Not because i hate that someone comes in my room every 5 mins and they usually end up severely pissing me off before they leave, and not because being in my own bed in my own apartment is sooooo much better than being anywhere else....Its because i hate feeling cut off and isolated from my normal life. I hate staring at my phone waiting for someone to call me or text me or hoping a friend comes on facebook. I hate hoping that maybe the next time the door opens itll be a friend not a nurse whos here to poke me with yet another needle :(. Although there are a few people who try to be there for a little bit when they can (aka Sarah, Allie, and Michelle) but i do feel forgotten in there. I appreciate even a quick phone call, its soooooo boring in there and I understand that people without CF have lives that dont include as much free time as ours do and i try to remember that but i still cant stand feeling like unincluded (is that a word? it should be...). I wish us cfers could be around each other because i know alot of us have this same outlook, and if i could id come visit each and every one of my CF friends and id bring them real home cooked food that only contains one type one type of animal per meat item and was not made in a lab and coffee thats not made from pine cones and bits of card board!!! The last admission i had was reeeally hard on me cause i barely saw or talked to anyone...im really hoping this one is different! Feel free to email me and leave me some love!

Heres to the few people i can always count on!!