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Aging Out of the ‘Life Expectancy’ for Someone Living with Cystic Fibrosis

Have you ever had a doctor tell you how long you would live? Has a doctor ever told your parents that you wouldn’t ever see your 16th birthday? To make you comfortable? To ACCEPT that number?

I have.

As a 62-year-old living with cystic fibrosis, I have heard and seen all of those numbers; the odds of how long I will live.  

When I was diagnosed in 1966, CF was basically an unknown disease. Not long before, most children who died because of CF were categorized as “failure to thrive,” a generalization – a guess.

I grew up with these scary numbers in my head, every day trying to ignore them; to look past them and live my life. I refused to make friends at the CF clinic when I was a child and went in for checkups… keeping everything separate and never allowing things to get personal.

That is, until I had to go in for my first tune-up after I graduated college. It was the first time my health really took a dive – and it scared the crap out of me. Parents at the clinic came into my room to see the “old CFer.” I was 21. It was the first time of many that I spent a prolonged time at the clinic; the first time I met other people with CF who I eventually called my friends. We stayed in the same rooms. We talked about our lives and the fact that dying early was just a fact.

This was before the days of PICC lines, rules preventing cross contamination, and medical breakthroughs. These were days of whole lung lavages (saline rinses) and metal butterfly IVs that broke regularly; the days when we all “checked in” to the hospital for tune ups at the same time and had pizza parties in meeting rooms.

There was a sense of being disconnected from the real world when I was in the hospital, surrounded by other people living – any dying – of cystic fibrosis. We felt like we were all that we had and that no one else could ever relate. The death of close friends became normalized – a fact of life that you just pushed through.

And then, I would have to leave the hospital and go back to my ‘regular’ life, my life outside of my disease. It would take me days to shake the negativity and feeling of numbness. But with the help of my family and friends – I did. I re-built my armor against those thoughts and refused to give into those predictive numbers. And I can honestly say that is why I am still here today.

Over the years, I have lost all of the friends I made from those hospital stays. I lose friends regularly who I now meet on social media and through my volunteer work at the Boomer Esiason Foundation. Sometimes those losses are so completely overwhelming, I think to myself, “Is it worth it? Should I keep making friends within my own community?”

And the answer I always, always come up with is simply, yes. Because, while cystic fibrosis can be overwhelming, especially for someone as old as I am – seeing the things I have seen – the community is special. The people I know now are positive. They work hard to stay compliant, to never give up, to advocate for themselves and for others.

This new generation of people with cystic fibrosis are FIGHTERS. And I like to think that my generation played a part in influencing that fighting attitude.

Living with cystic fibrosis today is completely different than when I was growing up, but some things are the same. We all spend a lot of time in the hospital and doing our treatments. We crave connection with other people who are going through the same trials that we go through on a daily basis. And we are still waiting for a cure.

Hopefully, I will still be here for the day when “CF” finally and thankfully stands for cure found; but until then, I will keep fighting.

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