Tag Archives: fighting cf

Not so deep thought of the day – The X Factor in fighting CF

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The CF Foundation states that the median age for CF is over 37. They and thousands of volunteers and doctors and CFers and CF families have worked very hard to raise that number.  Every one of these individuals deserves major kudos, including anyone who has contributed financially to fighting CF.

Now here’s my “not so deep thought of the day”: What would the median age be without the Internet?

Would it still be over 37 years?

Think about how complex this disease is and how opinions vary on treating it. Think about how important sharing information is in fighting CF. Think about how comforting it is to communicate with others who have this isolating disease.

Without the Internet would we know the best order of nebs? The best CF Centers? The best alternative therapies?

Here’s my question of the day: Have we realized the full potential of the Internet in fighting CF?

I don’t think we have.

I believe the Internet will help us fight this disease in new and creative ways we haven’t yet imagined, or yet implemented.  And I wonder what they will be. I wonder. I truly do.

The Ultimate Cage Match? Fighting cystic fibrosis

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Have you ever watched Ultimate Fighting?  It’s a simple concept: two fighters enter a caged ring and beat the living daylights out of each other until one of them is knocked out, gives up, or time runs out. It’s pretty brutal and blood is often spilled. I watch 30 seconds before I switch channels.

What strikes me about the cage match is how similar it feels to being boxed in or trapped by cystic fibrosis. Years ago, the cage was much larger and my opponent, cf, much weaker and inexperienced.  It was a mental game.  But my opponent has grown stronger and learned to punch and cheat and kick me in the groin.  The cage walls have moved closer together, too

Over the years, some great weapons have been tossed in the cage: TOBI, Pulmozyme, Hypertonic Saline, AZLI.  With them I have been able to give the hulking mass of bacteria a good beating.  Or, perhaps, at least moved it back to its corner to regain its strength.

But the cage feels tiny now and my opponent stronger and craftier.  The marks of two collapsed lungs scar my right chest, but most of the damage inflicted has been internal, though I’ve seen plenty of the blood.  And yet, I am so lucky, as it has hit others much harder and earlier in life.  But I still feel trapped by it, as it affects each decision and limits my choices in life. Just the stress it causes alone, is suffocating some days.

But I am lucky, very lucky.  I have my family, the CFF, my Twitter friends, my CF team, and Sharktank.org.  I know that soon another weapon will be thrown in the ring.  And better yet, one day someone will throw in the medieval battle mace of cf weapons.

With my spiked weapon in hand, I am going to beat the living shit out of this terrible disease for all the lives it has taken and the suffering it has caused. And then I’m going to beat it some more.  No horror movie ending here where the bad guy gets up again and again.  I’ll make sure of that.

Then I’m going to open the cage door and walk out, bloodied but still standing, the enemy defeated. What a day that will be.

Warriors in the battle against cystic fibrosis

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Warriors of the past believed they gained immortality when the story of their heroic deeds was told long after they had departed this world.

I ask today: Are the lives of those with cystic fibrosis and those who battle with and for them any less heroic?  I say no.  No.  NO.

The fight against cf may not have the glamor of three-headed monsters, battles at sea, or other movie-worthy imagery, but the quality of the fight and story is the same:

1) It’s a battle of life and death with suffering, pain and agony – and blood, or as the doctors like to say, hemoptysis.  The stakes of cf are as high as they come.  Fight every day to live on.

2) The battle continues over time – longer for some, shorter for others. However, living longer does not excuse someone from the brutality and torture of cystic fibrosis.

3) It takes an army to keep the enemy at bay.  If one looks at the fight against cf, success has come from the CF Foundation, an army of volunteers, doctors, patients, spouses of those with cf, and parents who believe cf is an enemy that must be defeated, that cf is as horrific and as evil as they come and must be sent into oblivion never to be seen again.

4) There are moments of glory and doubt.  What’s it like to recover some of your lost FEV1, raise 1 million or 100 dollars to fight cf, create a web site devoted to cf, or launch a new antibiotic that took years of research and red tape to get approved?  On the flip side, doesn’t the hero always have moments of doubt when they fear they cannot go on – that the cost is too great or the pain too much or the enemy too strong? And in that moment, we see him or her rise from their knees to fight another day and we know we can fight on, too.

4) Success does not always come from brute strength.  Odysseus defeated the cyclops through his clever use of language.  William Wallace in Braveheart defeated larger armies through trickery and traps on the battlefield.  Success against cystic fibrosis like many great heroic fights does not always depend on physical brutality, but rather one’s ability to outthink and outwit the opponent.  It’s a constant game of chess and looking for any edge or advantage possible.

5) It’s a story of love.  The story of cystic fibrosis may be a story of heroes, but it is also a story of a love unlike any other.  Odysseus longed to get home to Penelope; William Wallace lost and fought for his first love and gained another in the end.  Maximus in the movie Gladiator longed to see his wife and child again and it drove him in his final battles. The unsung hero of the story is the parent, sibling, spouse, boyfriend or girlfriend who carries on despite the odds.  What kind of bravery does it take to care for a child with cf or marry someone with cf?  Or, to carry on the fight against cf after the loss of a child or loved one?  What level of courage does that take?  It takes a love that even Shakespeare couldn’t put into words.

6) This is a battle for life, not immortality. The big difference today versus days of old is that this battle is about living.  Warriors wanted to die gloriously in battle for their names to be carried on.  The battle of cf is the opposite; it is about preserving life and every breath that comes with it.

7) The battle is not always a public one. Life goes on.  People wake up, they dress and go to school or work, come home eat dinner and go to bed.  The next day comes and the cycle continues. All the while, the battle against cf continues with a committed and crafty army fighting it.

Thank you to everyone who fights on behalf of those with cf.  The war is a long one.  The enemy is retreating and we are gaining ground every day.  But we must continue to run faster and we must strike quicker and we must find a way to save those who fight on day after day.  Dawn is coming and with it the end of cystic fibrosis’ evil reign.

It is at that moment that we will rejoice and go on with our lives as if nothing happened, the scars well hidden but always there and the stories of those lost on the battlefield always in our minds and hearts and on our tongues.

The New Army of CF Fighters Waiting in the Wings . . .

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There is a new army growing, destined to fight this disease – an army that proves we are winning the war against cf and who may help us win it.

The children of adults with CF.

I am lucky to have one, a daughter.  I wish I had two, but it just didn’t work out that way.  The one my wife and I have is perfectly imperfect.  Every day and moment watching her grow up is special.

What will be challenging to watch, however, is how cystic fibrosis affects her life.  We know her dad, me, has it.  Her mom is not a carrier (we checked before having her).  So, my daughter is a carrier.  She is physically touched by cf.

My daughter and the rest of the children who are growing up with CF parents have automatically been drafted into the battle.  And just as life reveals itself each day to her as she ages, so will cf in three ways:

1) My health and weeks in the hospital.  Not every kid spends weekends visiting their parent in the hospital, getting prompted constantly not to touch the floor with bare feet and to wash their hands constantly. Though, we do sneak to the roof of the hospital parking garage sometimes and scooter down in covert fashion, making the day special and unique.

2) How will she react as she gets older?  Will she want nothing to do with cf?  Will she join the battle and raise funds and blog about this terrible disease?  When she’s a rockstar traveling the country, will she paint “fight CF” on her guitar and hold benefit concerts?  Or, when she’s POTUS, will she direct more funds to cf research?

3) How will it affect her choice to have kids?  What if her mate is a carrier?  My hope is that by that time, cf has been cured.

Perhaps it will be this new army of kids with cf parents who joins the many cfers, hard working volunteers and CF Foundation to finally defeat cf – ending its terrible reign over children and young adults.

Wouldn’t that be beautiful? The ultimate middle finger to this disease.  Our children standing with others over the grave of cystic fibrosis.

How quick are you gonna get up?

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The current Nike ad Human Chain: How quick are you gonna get up? played throughout the Olympics.

Here’s the link:  www.nike.com/nikeos/p/nike/en_US/?sitesrc=uslp

My answer to “how quick are you gonna get up?”  Not so quick this time.

One of the many cruel elements of CF is its ability to change like the weather in a Colorado summer.  One minute I was feeling great with stable PFTs; the next I was on my back with the lowest PFTs I’ve ever had.

CF slapped me across the face – hard.

Now that I’m in my forties, each hospitalization becomes just a little bit tougher.

I’m going to change my answer to Nike’s question: It depends on how hard I get hit.  That determines how quick I get back up.

This time, I got hit hard physically and mentally.  Taking a bit longer to get up.  But I will.