Category Archives: cystic fibrosis

Health Care Bill – Call me Switzerland

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How polarizing is the new Health Care Bill? Is there a middle ground?  Were people this upset when we invaded Iraq and spent a ton of taxpayer cash overseas?  There are some fellow cfers on Twitter who are very smart and who oppose the bill.  I have to respect their positions and consider their arguments.

I’m trying to keep an open mind on the new bill and straddle the middle ground right now.  However, for the first time in many years, I have hope that I might not have to take my own life if I lose my insurance due to job loss or exceeding my total monetary cap.  I don’t want free insurance.  I just want the opportunity to buy it. Without insurance, I’m a dead man.

A college professor of mine once said that “truth does not equal fact.”  It applies to the new bill.  There are many “truths” out there right now.  Which one is the Truth?  Once I can sort out the facts from the truths, I’ll take a side.

Until then, come visit me in Geneva.

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.

Time, luck and the future?

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Two subjects fascinate me: time and luck.  I should probably thank cystic fibrosis for this obsession.  I don’t think a day goes by, or has gone by, when I haven’t thought about time or the luck that has helped me live so long with cystic fibrosis.

However, I repeat, however, I’m getting a little tired of hearing how you have “live in the moment,” as if today is your last day.  It’s not that I completely disagree with that thought.  I don’t.  Unfortunately, the idea can also result in exactly the opposite of what you’re trying to achieve in making the most out of your time – you can end up wasting what you do have.

Example: When I was in my teens and early 20s I lived with the expectation that I wasn’t going to live very long so what did it matter what I did.  And, most importantly, why plan for the future?  So, I lived in the moment.  Yet something went wrong – I ended up living a lot longer than I’d planned.  I’d never even thought of what it might be like to be 30 or 40 or 50.  Probably not uncommon for that age in general, but amplified by cystic fibrosis, it was a bad way to live.

I lost most of that time when I lived in the moment and did what I wanted, watched TV, worked, worked out, went to movies.  I look back on that time and think of all the things I could have been doing had I thought I might live longer and how the future would have been so much easier had I prepared better.

No one’s fault but my own.

I ended up playing catch up and going to college later in life.  Best thing I ever did and it improved my future.  The hard work and sacrifice of “living each day like it was my last” created a more positive, lasting result.

I still think of those lost years.

Yes, enjoy each day, live each day like it’s your last.  However, keep an eye on the horizon because the future, well, it’s coming one way or another and it’s best to be prepared.

Out of prison, but not sure I’m happy about it.

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I got today.  I wanted out.  But now that I’m out, I want back in.

I want back in because my stomach is upset and it may c-diff.  It’s much easier to get it treated in the hospital – and faster.  Outside I have to go to the stomach do and do a test on my own toilet the next day, then bring the sample to the lab.

Then I wait.  It takes day, especially if there is a weekend.  I don’t know if I have the energy to do this anymore.

That’s it tonight.  I am grateful to be alive, but a little down.  Tomorrow’s another day.

Day 9 in lock-up – smelling bad

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I haven’t taken a shower in about 8 days.  I never realized how many places on the human body stink over time.

Armpits definitely have the whole man-musk thing going on.  Antiperspirant is keeping it from being deadly.

Feet.  I made the mistake to wear old shoes without socks.  The odor coming from them may be one of the worst smells I’ve ever smelled, something like old cheese and vomit.  When I felt well enough to walk outside this week, I retrieved by slippers from the car.  Now the shoes are in the corner of the room as far away as possible.

Man parts.  Yikes.  Real sweaty.  Tried some speed stick down there.  Not much help with the moisture issue.  Must say my fantasy is to have a hot nurse clean the whole area.  Thinking the odds of that are about the same as finding a cure for cystic fibrosis.  Possible, but not likely to happen soon.

Hair.  Greasy.  It may not smell, but it looks like it does.

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.