I love “The Martix.” The first film, not the sequels. I remember looking over at my wife when the movie ended and we didn’t say a word; but our eyes said it all. Holy s**t!
Yesterday, a CF blogger I just met online posted her PFT results from 1982 to 2006. And I had a Matrix moment.
At the end of “The Matrix,” Neo’s sees the world in green code (picture to the right). When I looked at the PFTs, I saw more than just numbers – I saw the code behind her life with CF.
I saw the story of a warrior – a mother – who has drawn a line in the sand she won’t let CF cross. A woman battling over the decades to maintain her lung function, fighting for every percentage point and a life with her son.
There were 92 entries on the list and it’s not complete. Over 92 times she sat with a PFT tech or nurse and blew into a mouthpiece until her face turned red and her lungs were drained of air.
And, if you know PFTs, you know that you usually don’t blow once. You blow three times on average, depending on your clinic and how long ago it was. (How many computer candles have you blown out in your lifetime?)
I had never thought of PFTs in this way before – that they tell our CF stories in code. They reveal the low points in our lives when we wondered what we had done to lose so much lung function. (How did it happen? What did I do wrong?) They showcase our victories when new drugs were introduced or we exercised more or we found a supplement or treatment that helped us outfox the disease.
I wish I had a complete running record of my PFTs. I know what they would show and it’s painful. It would show that I was hotheaded and made more mistakes than I did correct decisions. That code would rip open old wounds.
I find it more comforting and motivating to look at others’ code and root them on.
What will our PFTs look like when a cure is found? Like Neo at movie’s end, that will be our victory for years of hard fought battle. The code will no longer matter and we can go on with our lives.
Roll credits.
The Unknown Cystic 
WOW – Love this post! Never thought my PFTs would spark such thoughts. It makes so much sense. I love how you put words together. You have a gift!
Thank you so much. What a nice thing to say. I was truly inspired by your post and story. I know we’re close in age and we both have children. When my daughter was born, I started getting aggressive with treatments. My mother’s goal was to see me graduate from high school. Now it’s my goal to live to see my daughter graduate from high school.
AND YOU WILL DO IT ! ! !
My goal is to be a grandmother ! AHHHHH !
I got my records going back to 2006 a few weeks ago… a roadmap of my life since just before our wedding. Up and down. Up and down.
Have you posted them? It would be interesting to see.
Of course after HS graduation and college graduation and settled with a job 😉
To think of being a grandparent means I have to think of her with boys. Can’t do it. 🙂 I’m too busy enjoying her being 8. Time goes by too quickly.
Somewhat:
http://www.cffatboy.com/2010/03/fatboys-historical-weight-and-lung-stats/
I remember looking at that chart. It is a good snapshot of the purpose of your web site and battle to gain weight.
my replies are in the wrong section – I’m sure you’ll figure it out 😉
Fatboy – would love to see your ‘matrix’
I can relate to the ripping open old wounds. Until recently my 19 year old mind finally started to clue into the 3rd hospital visit I had in this year. Something finally clicked when I went back and my lung function, after a sinus surgery and 3 weeks in the hospital, had still not risen from 76%. I used to be the girl that could swim in 12 feet of water and hold my breath, dive, and cross the swimming pool without any effort…. Those were the days that I was at 105 of my predicted FEV1’s. This Tuesday I went to the doctor and I am now at 83%. It’s a wonderful feeling when you are at the highest weight you’ve ever been (115lbs) and you’re not afraid to be put in the hospital with every visit.
It’s a slow and grueling process. The tedium is a battle for me everyday still. I harmed my body when I was 14 to now with absence of treatments, smoking, and neglecting the diabetes I was diagnosed with.
Our lives seem to follow patterns. I have two sets of numbers to back me up. Two parts of me that come together to make a whole. Such simple numbers that were passed over without much regard, and yet serve to function as a vital connector to all of us.
These numbers are so significant because they speak the words that many of us do not come to recognize daily. We are not alone.
Thanks for the post. It’s really great to be able to have these connections and thought stimulating posts!
Wow. Very cool comment and story. I think a lot of us harm ourselves when we’re young.
I especially like the following that you wrote:
“Our lives seem to follow patterns. I have two sets of numbers to back me up. Two parts of me that come together to make a whole. Such simple numbers that were passed over without much regard, and yet serve to function as a vital connector to all of us.
These numbers are so significant because they speak the words that many of us do not come to recognize daily. We are not alone.”
Very nice. Very nice indeed. You made me think. I appreciate that. Thanks for taking the time to visit and contribute.
Love this. Not that our story can come close to your formidable and ongoing challenges of course, but love the message and what it opens up – seeing those numbers as a lifeline of choices, health status, emotions and decisions, all that affect and are visible in the ability of the dreaded lung.
As we briefly touched on before, my 7 year old has Chronic Lung Disease, born 3 months prematurely, 1lb 11 ounces, on ventilator for almost 3 months in NICU etc etc and has had lung issues ever since.
Interestingly enough I see you mention mile high and the broncos on your header – are you in Denver? We lived for 9 years in Castle Rock, (he was born at Swedish Medical), moved to Texas in 2009 for 20 months before moving ‘home’ to Australia. Kiddo hasn’t had an ‘episode’ (and by that I mean emergency room visit with inevitable PICU stay) since we got here.
We are on the coast, country town, air is clear with a tang of salt, the ocean is our neighbor and our son is worlds healthier. I just wonder how much pollution and environment have to do with the health of an individual with any lung challenges – not as a cure, but as a lessening of incidences.
He was the sickest he’s ever been when we were in Fort Worth – and now I put it down to all that damn fracking! (plus I’m determined the water is poisoned, so many crazies there!) Anyway, I wish you well, and know that with vocal and intelligent advocates like yourself the likelihood of a cure is imminent – always remember, “there is no spoon.”
K,
Thank you for sharing more about your son with me. He’s lucky to have such caring, loving parents. I don’t think it’s an accident that he has done better near the ocean. One of the most important treatments for me has been inhaling hypertonic saline, or ocean water in an ampule. I think environment has a lot to do with lung health and incidences. It’s great you were able to move back to Australia and provide him with a better environment. And yes, fracking is the worst. I watched a documentary on it and people were turning on their taps and lighting the water on fire. One day, society will look back on fracking and say “WTF were they thinking. Were they out of their minds putting those chemicals in the ground near the water supply. Shameful.”
There is no spoon? Why don’t I know that off the top of my head.
UC
When Neo visits the Oracle for the first time the kid practicing spoon bending tells him the the key to spoon bending is realizing there is no spoon. ie perception is not necessarily reality. Fascinating on the ‘ocean water in an ampule!’ I guess he’s getting the real thing here then. We were lucky to have this option. 🙂
Thank you for the recap. I claim tiredness after working 10 hours and sticking to my blog a day goal.
Sounds like your decision was based more in love and knowledge than luck. 🙂