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Guest Post: Continuing Life

Today’s guest post is brought to us by Bo Butler. His Ashley had her double-lung transplant in 2007. They go to Pittsburgh for her care and she is doing great! I trust that you’ll find this as thought-provoking as I did.

FamilyThere’s something I haven’t talked much about on my blog, so I’m grateful to Fatboy for the chance to guest-post-it-up. It’s something very important to both myself and to Ashley. Something, in a larger way, becoming increasingly important to a CF community that, for the first time in human history, has the medicine and the technology to stay alive longer. Long enough to want and to deserve more from life than simply breathing.

What is the goal of continuing life?

Continuing life.

Since she was very, very young, Ashley has asked little else from life than that she be able to have a child. Initially the problem was that no one thought she’d live past ten. Once she passed that they thought she wouldn’t live past twelve. And so it went. Until she got old enough that her body – hampered by lowered lung-function though it was – would be able to conceive and even carry a child to term.

And so of course worried doctoral hearts palpitated with warning. Blood pressures went up beneath blindingly crisp white smocks. Social workers were brought in. Discussions had. Fingers wagged.

Ashley’s a smart girl, though. Smart as she is tough. [Read more…]

Inflammation: The Elephant in the Room

Guest post by Bryan Hyde – another patient at Tampa General Hospital. We met out on the steps of the valet area one day waiting for our cars to be brought to us like kings.

Elephant in the RoomI am a 38 year old male with cystic fibrosis. My journey started 12 years ago when my PFTs were in the low 30s and I decided I was not going to go out with a whimper. I also told myself that I wanted to keep the lungs that God had given me for as long as possible. I decided to make researching my disease a second job and was determined take control of my life and its outcome. My research led me to one major conclusion that has directed the way I care for my body.

Controlling inflammation is key

My belief is that I needed to attack the inflammation like the Indians attacked Colonel Custer. I wanted to surround it and attack from all sides leaving no route for escape. In other words, I was searching for an integrated approach to reducing and/or eliminating the causes of inflammation in my lungs. Inflammation causes a negative feedback loop in the lungs of people with cystic fibrosis “inflammation begets inflammation.” [Read more…]