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!

Appointment/Health Update!

Its been a little bit but i hope everyone new year has started off on the right foot so far! Just to update everyone on how im doing I had a doctors appointment today at 3 and it didnt go as well as i hoped but i wasnt admitted so I definitely not complaining. I lost 2 pounds (down to 96 now) and my oxygen levels seem to be staying right around 94 now. My FEV1 was the same 28% as my last appointment and although its disappointing that its not higher im glad it hasnt dropped. The last 2 days ive been coughing up blood as well but its under a couple tablespoons a day so its not a huge concern right now the doctor just said to call him back if it doesnt stop or it gets worse and hell set up an admission right away. Also ive had a bit of a cold for over a month now but since that seems to be clearing up too im not worried :) all in all i think it went okay but it was a pretty disappointing feeling to have worked so hard like i did and still have lost weight and to have my lung function stay the same...i thought for sure id made a difference! This just means i have to work even harder before my next appointment. My weight goal is 100 lbs (i wont be healthy enough for transplant till i can gain and maintain my weight so is really important) and i wanna get my FEV1 up past 30%, its gonna be really difficult and take a lot of time and work to get there but i have an amazing support system full of people who help motivate me and keep me on track and im so thankful for all of them! Heres hoping guys!
xx

But On A Happier Note...

Well this weekend was amazing :) Friday Allie and i met a bunch of friends at Tobys in Rosemont and had an great time, we were gonna just stay a few hours have a drink or two and head home early but ended up leaving at 4 when they closed hahaha worth it though i had a great time! Then Saturday we wanted to go to wrigleyville but got lost on the way there and then finally found it and parked and had to go back to the suburbs cause al realized she left her passport in the driveway hahaha we got to the bars at like 1230-1am but it was still fun! Lots of weird people seemed to be out though. Im back to doing the whole standing by the bar half dancing half trying to move as little as possible thing lol, and i miss dancing terribly but ill get back there! Sunday i went to the Blackhawks game with Joey and it was a great game they won 6-2 against the panthers and we were only 10 rows away from the glass so i was very happy about that! Breathing is getting tough again and last night i barely slept at all because of it im hoping im just in a bit of a rough patch right now but who knows, im pretty nervous for my upcoming pft tests in January im praying my lung function is higher than 28%.

All in all though things are good, no actually their great :) and i couldnt be happier with my life right now.