This time I've got some new news, some exciting news and something worth sharing. I'm back on Kalydeco!
At the beginning of this year I elected to participate in a clinic trial that my hospital was running. This trial went for 4 months to investigate the possible impact of Kalydeco on 'exercise tolerance'. During the 4 months I attended hospital appointments every 28 days to repeatetively complete a range of different tests such as; sweat test, full set of bloods, questionaries, comprehension test, pregnancy test, sputum culture samples, lung function test, ECG test and 10-15 minute exercise tolerance test on a gym bike. For the first 28 days everyone was on 'wash out' meaning everyone was just continuing on normal treatment without Kalydeco, the second visit we were given 28 days supply of either placebo or Kalydeco, third visit was 'wash out' again and fourth visit we were given the opposite 'drug' to the first supply (EG. if you had placebo the first time you would get Kalydeco the second time and vis versa). This was a double blind trial meaning that both patient and doctor were not allowed to be informed on which 'drug' they were given.
I knew 100% exactly when I was given Kalydeco and placebo because of my past experiences on K. My Kalydeco supply ran out in October last year and my health had began to gradually fall back into its old ways. I was having increased difficulty sleeping due to coughing, I felt congested and I just felt tired and lethargic. The trial started in February and my health continued the same while on 'wash out', as predicted because nothing had changed in my health care. 28 days rolled around quickly and it was time to go in for the March trial appointment. I went through the same tests as the first time but this time I walked out with 56 blue pills…I was undecided whether they were the real deal or just a bunch of sugar pills disguised as magic!? I was sceptical and decided to remain undecided unless I had reasons to think otherwise. March turned out to be a fabulous month… I knew within the week I was back on special K!! Ohhh what a relief, I really needed this boost! Within a week I could finally go to sleep laying down again as my reflux symptoms had gone, I felt energetic and I could finally clear all the mucus in my lungs easily. It was the fastest 28 days I had ever lived in my 25 years of life. I felt sad to see the pills disappear as the days went on because I knew I was then in for 3 more months without it.
It was April and it was now 'wash out' again. I felt good and I knew the end of the trial was in sight and I would be back on Kalydeco in no time. I flew back to Sydney to resume normal life and work again. About 2 weeks into April I caught a shocking cold- blocked nose, head ache and congested. It was a massive punch in the face. I soldiered on and knew it would pass however the cold turned into a cough that sounded like a 90 year old man who had been smoking his entire life. I just couldn't shake it and I started coughing up about 1 -2 cups a day of thick green mucus. I was extremely congested and had great difficultly breathing. I started to get only 3-4 hours sleep at night because of my coughing and Mike and I started taking turns of sleeping on the couch. I'd spend hours and hours tirelessly coughing until I finally got to sleep and then when morning came I would start the whole routine again until round midday when my lungs would finally settle. I'd sometimes cry in the shower because I felt so exhausted and frustrated that I couldn't clear the thick mucus from my lungs.
I flew back to Melbourne for the May appointment and I wasn't in a good way. I was in two minds about whether or not I should go in for a tune up. I was hesitant because I knew the trial would end soon and I would be back on Kalydeco. I decided not to have a tune up and continue on oral antibiotics to try and get rid of the lung infection. This was a bad idea. I went from bad to worse. Probably on par with the worst I've ever felt actually. I knew I was on placebo this time as my health did not improve in anyway. I felt so tight in the lungs, so congested and all round horrible. My sleep became even more reduced to a maximum of 2 hours a night and I'd operate like a walking zombie in the daytime. I'd say there would only have been about 15% of the day that I wasn't coughing, the rest of the time I was coughing violently until I vomited or turned red in the face. It's pretty hard to operate your life when this happens every single day…never letting you have a break, ever. My lung function dropped to 62% the worst its ever been, I lost 4.5kg and I had huge bags under the eyes. I couldn't do my work and some days I'd just sit in my office chair at my desk staring at the screen unable to work but unable to sleep. It was 7 days till my 25th birthday and 8 days till the end of the trial and I'd be back on Kalydeco! I had my eyes set on that date and getting Special K was going to be the best birthday present ever!! 3 days before my birthday I received an email from the clinical trial doctor explaining to me that there was a 'hold up with the supply of K and that I would most likely not be able to receive my supply at the next appointment'. This was devastating for me…I'd had my heart set on the 28th of May since the start of the year and now all of a sudden my future was so unsure again. Not only did I feel really unwell I also felt depressed knowing that I had to continue on feeling this way for an undefined amount of time…an all too familiar feeling for the CF community at the moment.
I flew back to Sydney empty handed. I think psychologically I was really struggling. I let myself slip into the downward spiral I used to know over the next week. Barely able to function I just sort of just existed for the next couple of days unsure about what to do with myself. I was so desperate for some sleep and relief from my lungs. I started searching the house for a packet of Kalydeco that I thought I had left over from last year. I knew I had 6 or 7 left over tablets from a time I had to reduce my dose due to hemoptysis (coughing up blood). I started turning the house upside down, looking in every possible bag, cupboard and draw in the house. I felt like a junkie, blind sighted and focus on finding the next hit. I couldn't find the packet…I concluded that i must of packed it in the bags I took back to mum and dads when I moved to Sydney. I knew deep down that not even Kalydeco could fix this predicament I'd gotten myself into. Kalydeco is brilliant but it's not designed to get rid of lung infections it just helps prevent them. I decided to book myself into hospital for 2 weeks of IV antibiotics. I travelled back to Melbourne and stayed with my partners parents place again to complete my tune up. Luckily during my tune up the supply of Kalydeco arrived at the hospital and I was given my ongoing monthly supply. The IV antibiotics quickly helped with my lung infection and Kalydeco began working its magic again!
I've now been back on K for 3.5 weeks and I'm a new person again. I've been sleeping easily, again all my reflux symptoms have gone, I've put on the 4.5 kg's I lost, I no longer have coughing fits to move the mucus and I have 110% more energy! I am still coughing up thick mucus as I think my lung infection is hanging around a bit but it much easier to move thanks to Kalydeco. I am extremely grateful to have had the opportunity to participate in the clinical trial to allow me to gain on going access to K and I so thankful to have my health finally heading in the right direction again.
Over the past couple of months I have felt extremely overwhelmed by the Kalydeco campaign, especially when I was feeling so unwell. I do feel a great sense of responsibility to speak on behalf of so many people in desperate need for this miracle medication but sometimes I have to take a step back and focus on maintaing my own health. Now that my health is getting back on track I feel stronger physically and mentally and I will continue to fight for those that so desperately need access to Kalydeco.
Kim is a great friend of mine from university and she assists me on commercial shoots when I'm back in Melbourne for work. I was booked on a shoot in Melbourne at the same time I went into hospital to have a 'Tune Up'. My work means everything to me and I am determined not let CF stand in the way of my passion. Kim and I had a giggled on set as I shot one handed whilst being hooked up to my IV pole! It was a bizarre sight thats for sure! Kim decided to document it.