♦Time, before and after.

♦ How I will make the most of it ♦ And how it will make the most of me.♦


The best way to read this blog is from beginning to end

Please use the sidebar's archive index which has been created showing the original post first

with each post successive afterward.

First Post is "Time" January 11th, 2012

SOB = short of breath

Sunday, January 3, 2016

Miranda Suzanne Hutson
August 21, 2012
I found Miranda on Facebook where her picture has gone viral. To date I have never met or seen someone so eloquently illustrate what life on a canula is all about.  I have tried to write about it here, but Miranda covered it all in one picture!

Yes, this is me. Truly me at the hardest and scariest time of my life. I was dying from Cystic Fibrosis, a genetic lung disease that I was born with. I had a life saving double lung transplant within a few months of this picture being taken.

I guess people can take from this what they will, and if you connect with this on your own personal level even with your healthy nonCF bodies, then we did much more than what we meant to. How awesome and incredible!

I do want the true purpose to stay intact with this picture though. Cystic Fibrosis patients, like me, know that I posed for this picture for them. This wasn't a display of inner turmoil for just anyone for any situation. This was and is a portrayal of life with Cystic Fibrosis. This was a tool that was meant to be used to spread awareness about Cystic Fibrosis and touch the lives of those affected by it. This was meant to be a booming, blaring voice for US.

If you share this picture I truly hope you keep that in mind, and do your part to spread the word. So that others that have to be born with this horrible disease can someday see a cure and feel true understanding from all of their peers.

So many out there need a cure. Please be a part of making that a reality instead of what you see in this picture. Thank you all.
— with Curtis Almeter and Tommy Danger.

update from Amanda April 19, 2015

For those of you that have seen this picture circulating around FB and didn't know the story behind it, here it is. Myself and a fellow Cystic Fibrosis patient, Curtis Almeter, were inpatient at Barnes-Jewish Hospital in St. Louis, Missouri. We were both listed for double lung transplants and awaiting our life saving calls. Curtis is a working photographer by profession. One day the idea just hit us to try to capture what end stage CF feels like in a single picture. We set up a photo shoot in his hospital room bathroom, which was next door to mine. We asked for extra tubing for my oxygen tank, and this was the result. This is as real as it gets. My lung function was about 19% in this picture. Curtis received his transplant on December 24, 2009, and I received mine on January 13, 2010. We are both doing well over 5 years later. I'll never say that CF isn't a struggle, but there is beauty in there underneath the hurt. We are truly a resilient breed. We are the new age Spartans of every day life... in the sense that we are born to fight and trained every day to survive a lifetime of war. Never back down. Never give up.


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