"Two roads diverged in a wood, and I... I took the one less traveled by, and that has made all the difference." ~ Robert Frost ~
May 22 2012 my life, no, OUR lives changed.....
First dose of Klaydeco
Filled with a life time of fears, the apprehension I felt upon receiving Kalydeco after a 6 month long battle to gain access was overwhelming. I was numb. I guess I didn't wish to be disappointed. The question spun in my head, 'Was it a little too late for me?'. Within hours my question was answered. 'No', it's never to late!
My lungs felt hydrated, wet, soothed. I was not even aware of how uncomfortable they had become. So inflamed. Raw. Then the coughing started. But not the old type of 'stuck' coughing, but the type that gets things up & out!!! What a feeling, the ease & comfort I had never known. Feels like a baby first tasting chocolate, first comes the shock and disbelief of how good it tastes, then the delight! I coughed up a lot that first few days. Yes I had little bleeds, but nothing serious. They happened when hard plugs were dislodge from deep down in my lungs. I was prepared for a dramatic transition after reading many different experiences, but for me I can only describe start Kalydeco as a peaceful, gentle & comfortable in terms of my lungs and digestion. My sinuses was whole another story!!!
Totally unexpected for me as I had never had sinus issues. Within a couple of days I came down with what I thought was a 'sore throat', but it was very odd. The place of the burning was unusual for me, right at the place where your sinuses meets your throat... anyway, it got worse and worse and WORSE! I thought the worst, "oh no!!! I'm allergic to Kalydeco". Freak out! But the next a.m. I awoke and felt a very hard lump right at that sore point. I decided to suck it down (if I could) not sure if it was my sinuses or something else.... Oh. My. Goodness.!!!! It was like my sinuses gave birth to THE hardest, darkest plug I had ever seen. It was the shape of my sinuses. I had no idea it was there. The inflammation (severe burning) subsided instantly. I thought it was over, but no, this happened on and off for about a month. Better out than in! This was the beginning of my transformation....
Phoenix from the Flames
Before & After
(Yes that's the same dress! I squeezed it back on just to show the difference... good thing it stretches!!)
Big Thank you to my friend Nicole for putting these images together!!! xo
These are my Lungs. Before Kalydeco were overtaken by bronchiectasis, infection and mucus. After less than a year on Klaydeco the bronchiectasis in most of my lungs has healed. Mainly present in the two upper lobes (the white in the 'after' picture is my heart). My lung function was 40% when I began Kalydeco. It is now sitting on 66.7%.
Another incredible improvement to experience once starting Klaydeco was my increased appetite. It was huge! I was hungry for the first time in recent years.. When I went into cafes I actually fancied the food on offer, instead of choosing something I could 'tolerate' I actually enjoyed the taste, smell & experience. This has been a great comfort to me as I have always loved good food, rich food just didn't like me! Before Klaydeco I would try eat foods that I enjoyed, but more often than not it would cause lots of coughing after. I gained on average a kilo a week. I started Kalydeco fluctuating between 37kg to 43kg. I was 41kg when I got Klaydeco.
- 6 months of taking Kalydeco: I gained 15kg. I weigh in at 56kg and have remained so (my perfect BMI) this whole time.
- Sweat Chloride Test before Kalydeco was 86. 6 months later on Kaydeco: 46!!!
My life on Kalydeco in short is a dream come true. Prayers answered... I have not enough words to convey what it means to me and my family. There are no words...
Our year in pictures
If I had any advice to others starting Klaydeco or waiting for kalydeco. Stay as healthy as you can. Make healthy choices. Eat well, eat fresh, eat Organic, eat gourmet, but don't eat nasty packet "food". It will only make you sicker in the long run. Hydrate. Juice! Juice for nutrition, enzymes, oxygenation, minerals, vitamins, hydration, energy and healing from the inside out! And supplements really help!!
Grace Kelly always ate her fresh fruit!
In truth my joy is bittersweet; overshadowed by sadness and grief. For the loss of my dearest friend to CF and for those still awaiting their deliverance from this relentless brutal disease that is CF. I am not cured, no doubt, but I can say that if I didn't sustain all the damage from CF over the 31 years of my life without the assistance of Kalydeco, I would feel cured!!!
Australians Need Your Help!!!!
In AUGUST our Government announced the outcome of the JULY PBAC meeting which decided the fate of Kalydeco in Australia. It was devastating news to the CF community that Kalydeco was INDEFINITELY deferred. As a community we are now trying to raise as much awareness & support for #YesToKalydeco. We are asking people from the bottom of our hearts to PLEASE help us send a message to the Australian Government and Vertex about why kalydeco is so important to CF patients!!!
No matter where you are from you can sign our petition, every persons input counts!!! Please Click the link below, sign and share to help to make a difference to the future of so many lives... So many families are hoping for #KalydecoForChristmas
Our Change.org #YesToKalydeco petition LINK:
To support further please like our Facebook #YesToKalydeco Page
Last but by no means least; THANK YOU to all the hundreds of people who have written and supported what I am doing and making this blog a success for CF awareness! (last count CFMUDDA has had 30,000 views!!) My hope it that it gives you all HOPE and the courage to continue the good fight. I will not rest until CF stands for Cure Found!
"We are all too young to die"
~ Florence and the Machine ~