Sunday, 27 January 2013

Advanced CF. Kalydeco. Phages. Stem Cells.

Charles and I crabbing today by the seaside

What a busy week I have had! My sons are still on their summer break and we've been enjoying our time together... Jerry Seinfeld is right, "A two-year old is kind of like having a blender, but you don't have a top for it.*ha ha! Little boys are crazy busy little people, but I love it!

In ALL my spare time (*ha ha) I have also been cramming in research and reading information on Adult stem cell therapy and Phage therapy for Cystic Fibrosis related lung disease. Plus writing/talking, endless communications with all sorts of different centre's, at home in Australia and overseas in my search for better health. These two treatments really are the future for severely effected CF lungs.

Basically the point or reality at which I my health at is: Kalydeco is a life saver, no doubt about it. Compared to before, my/our life has improved 100% since starting on it last May. However, I still have the scar of the CF legacy if you will. Lung Damage. If I'm to sustain this improvement I need to keep moving forward by seeking other treatments to continue this amazing improvement to my health that Kalydeco has kick started and now I have Kalydeco on board I have a better chance (and energy) of making the most of these other treatments I am learning about.

"Nothing is impossible. The word itself says 'I'm possible'". ~ Audrey Hepburn ~

The Fact is after 32 years of chronic lung infections your lungs are left with these scars, in that damage is a perfect breeding ground for bugs, making it very difficult to clear the ever present Pseudomonas. As long as these issue remain in significant amounts, then I will ultimately decline, slower and more comfortably now I'm on Kalydeco, but still it remains a concern. The only thing I'm afraid of is doing nothing...

"An Ounce of Prevention is worth a Pound of a Cure"

I'm a huge believer in PREVENTION! Hence my passion for healthy choices. That's also why I'm so excited for the CF patients out there who have no or very little lung damage, because Kalydeco will help prevent it for you giving your lungs a fighting chance for a long and happy life. You'll feel so close to normal that you'll feel, well normal!!. Older patients like myself Kalydeco is our saviour. We hung on just in time to catch the K-train!

Bottom line is my desire to raise our four sons with my love Benny, to see them safely to their manhood. I will do everything in my power to protect them from CF. I don't want them to be hurt prematurely by this beastly disease. It would bless my heart to see them grown. I am so content when we are together. I would miss them all in Heaven.

Time to dust myself off and start again! I'm excited! I am not afraid, only happy and thankful to have this opportunity. I'm ready to take on this challenge, this is relatively uncharted territory, I'm used to that by now! Before Kalydeco I had no energy left to take on anything else medical. Now I'm so motivated to get stronger and stronger, half won't do! Since kalydeco tamed the CF mucus monkey in my chest I have caught my breath and reclaimed my mojo! I have a chance to turn my future and my family's around, I'm going to grab on with all my might. Pray it be God's will.  I draw on all my strength for four very good little reasons...

No comments:

Post a Comment