Sunday, 13 January 2013

What Kalydeco Has Given to Me

Pseudo... Pseudo What?! Thats right, The 50 shades of green that do stuff in and to our lungs! Insert haunted house voice* Pseudomonas!.

It's possibly: The. Most. Gross. Thing. about having CF!! (for a girl anyway) The problem is if it's in there (our lungs) its causing damage. That's where I'm at. Kalydeco has worked wonders and continues to do so, however, it doesn't turn back time. I'm entering a new stage of my illness that I never thought possible, a gift if you like from Kalydeco:


Before Kalydeco there was no significant hope to turn back the hands on time on my lungs. 40% lung function, well historically theres no direction but down from there.. As you've seen I have always done quite a bit to support my natural health, but when something 'unnatural' happens (like an accident) recovery time takes someone like me a l o n g  time. Fracturing my rib in 2009 was a down turn for me, quite rapidly too. It's taken years and to be honest Kalydeco came just in the nick of time. I'm not sure how much longer I could have continued putting in so much effort to stay afloat. Transplant was inevitable.... but not so now!

But not so now.... wow.... whenever I sit and really think about it, I feel like getting down on my knees, weeping with relief and such a deep gratitude to the mercy that has been shown to me. I just cannot even begin to express how saying that and then actually having it be true feels like. It's not just a dream anymore, but a real possibility!!! Thank God for this.

"I've conquered hills, but I still have mountains to climb" ~ Tracy Chapman ~

This is my unexpected journey without a doubt, the expected on was transplant in the not too distant future, but now I am seeking ways and means to cure (naughty word I know!) pseudomonas and to rebuild some damaged lung tissue. I've been writing and enquiring with many clinic, centres, professors, universities these past few weeks, I am coming closer to answers about different options. One possibility is Phage Therapy. Another is Adult Stem Cell Transplants. It's made me so Happy to truly Hope again!

A more humble and more immediate possibilities to kick Pseudo to the curb, are a few little herbs and remedies I have an order, with which I am going to hit it hard. I have never tried these things before, so it's going to be exciting new experience to see the results. I will biog about any that work ( and possibly ones that fall short too!). Oh and no more 'mr nice' juice, I will be making my full on compost combo: all for health not for flavour!! 

But with all this I never lose sight of the catalyst of all this optimism and motivation, Kalydeco. It's my Hero, my Champion, my Blessing. (MY PRECIOUS! ha ha! No I haven't gone completely bonkers over it yet, I promise!). Without Kalydeco my life would be cut much shorter. The possibility of seeing my boys grow up was slim. That is all I want from this life, time to be together, I love them so much.... Is there a price you can put on that?

At this historic time hundreds of G551D patients all over England are getting their special-k after a long battle to have their government come to an agreement over the price tag. I look beyond the politics to those suffering day in day out. I have been dumbfounded at the whole process, that it's so removed from those who are battling for their breath. Yes, this is a subjective argument, but it's also a compassionate one. So many heartbreaking stories we've heard from all over, who could deny these dear people? Tomorrow is D-Day for Scotland, to be or not to be... I cannot even believe its a question!!!! I love you Scotland, I am half of you, never forget you are Scotland the Brave!!

We will not be easy with this unbalanced distribution of Kalydeco, all G551D patients desperately need access to it. All CF patients deserve to feel this way!! No Exceptions. It been a long hard battle to get this far, many of whom we've loved (love) and lost... it's a heartbreaking reality of CF as we've know it, Kalydeco is our first glimpse of real Hope for a better life.
Now, this year, it's Australia's turn to fight for Kalydeco, Together we will Stand United and Win this! xo

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