Cystic Fibrosis, a Fresh Gulp of Air

If you know anyone who battles in the fight of their life then you understand, you can see it, the brutal struggle. Cystic Fibrosis is one of too many diseases that always takes you down too early and always wins. Until now.

In past if you had CF your only possible chance to survive was getting a double lung transplant and surviving it. I was given the chance to live back when I was a mere 28 years old. I grabbed onto it with everything I had, a heart and double lung transplant in 1988. My life was within days of being finished by CF, I’m now soon to be 67 making me the longest surviving man post transplant, God is so good!

The Game is now over for people like me to receive a transplant for this horrible disease, there is instead a new life chance with the new medication! This new name on the block in the Cystic Fibrosis neighborhood, it’s called Trikafta. This hopeful and seemingly amazing drug offers life to those of us labeled with pending doom, aka CF.

Is it truly possible CF people can have a chance to really breath a full breath? Free from chest rattles and clogs from thick mucous? The coughing, hacking so much that your nose bleeds. Is this a miracle drug or just a way, I mean waaaayyy over priced promise that amounts to no help?

I myself have been on Trikafta for 3 months now and I honestly am a believer, it works for me. Yes of course I have had the lung transplant which means my lungs are unaffected by the ravages of Cystic Fibrosis. My problem is that I still have sinuses that are clogged with mucous since I was born nearly 67 years ago. Sinus problems don’t sound bad right, ha, yes it is a problem. Everyone has sinus drainage, for me what drains out sneaks into my lungs thus causing a large chance of infection.

The Trikafta does its magic with its job of basically thinning down the thick mucous so much that it just flows out. Of course this is just a basic idea of what this amazing drug does and of course there is side effects. Also the financial cost is profoundly massive and the insurance game is complicated. Not every CF patient can get it, you must have the correct mutation of CF, or maybe the wrong one anyway.

So my takeaway for all this new and amazing drug is, “double thumbs up” but its not going to work for everyone even if you fit in the parameters of guidelines. This makes me very sad for my fellow CFers. While the drug is there it maybe just beyond reach.

This is Steve age 27 one year before heart/lung transplant. Cystic Fibrosis eroding the body 1 day at a time, that’s what it does.