Monthly Archives: March 2010

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.

Ronnie and Mandi in the Arizona Desert

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I really enjoy reading about, and watching video of,  Ronnie and Mandi.  I like following their exploits in the Arizona desert, watching them singing rock songs while driving and eating romantic dinners at the hospital, making the best of every moment.

Interestingly, I discovered today that cystic fibrosis has very little to do with why I enjoy the adventures of Ronnie and Mandi.

Yes, cystic fibrosis is a terrible disease that I hate to my core and obviously plays a role in their lives.  However, like a flower that grows alone on a rocky hillside, CF can also defy logic and conditions and blossom a courage of love unlike any other.  And it is love, not cf, that makes Ronnie and his heroine such a compelling story to witness.

Their actions and joy in the face of a mighty wind exemplify what is best about youth and humanity – no matter what life throws at you, being together with the person you love, if only for a moment in time, can overcome the most insidious of enemies.  These two crazy kids embrace the storm and reach out to others, telling them, together we are stronger.

So, today, I sit ignoring my work.  Instead, I take a moment to admire Ronnie and Mandi and every other cf couple who has said “no” to fear and “yes” to the here and now, and who has treated life like a juicy orange and squeezed every breath and drop out of it.  And, I’m grateful for 24 years with my wife.

I thank Ronnie and Mandi for sharing their story.  I wish them a lifetime together and humbly pass on this Springsteen verse, as it has served me well over the years:

We made a promise we swore we’d always remember
No retreat no surrender
Like soldiers in the winter’s night with a vow to defend
No retreat no surrender


I heart Broccoli and Sharktank.org – CF fighters

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I have learned to love broccoli.  It hasn’t been easy and it still tastes better with honey. Yet, I eat it everyday – everyday.  Not a piece or two or three, but a bowlful at dinner each night.  I feel like a horse chewing it up.

Why have I gone on this broccoli bender?

Two months ago I read an article that broccoli might combat the effects of CF.  As someone who has tried many alternative therapies to calm the cf beast (I knew about ibuprofen before the docs did), this one seemed like a no-brainer.  So, my wife started serving up bowls full of it because I wanted as much of the mystery chemical as possible.

This is what happened or didn’t happen . . .

After years of bad, unpredictable digestion and IBS, my digestion became perfect.  Yes, perfect. Not almost good or near perfect. It became perfect for months. I expected the opposite – that the amount of broccoli I was eating would be the equivalent of a bottle of Liquid Plumber on my system.

But I was wrong. Something else happened.

I started noticing that I could reduce my enzymes by 1 or 2 or 3 capsules per meal.  And, I gained weight, which I don’t need to do.  But the pounds came against my will.

Now it’s important to know that this happened before I knew about sharktank.org’s excellent research into Benzyl Isothiocyanate (BITC), which is similar to the AITC in broccoli.  The reason why it’s important to know is that my CF Clinic started missing me during the great broccoli experiment and was worried.  I remember saying to them at a recent appointment these exact words “there was a period of a few weeks when I felt normal, like I didn’t have CF.”

Enter the most excellent Sharktank.  When they experimented with oral BITC, they said the positive benefits worked for a while on the lungs, but then localized to improving the digestive aspects of cf (something about the liver filtering out BITC. Check out their site for precise info).  Now they are looking at using a trans-dermal patch or something similar to deliver the BITC.

So, here is my question? Was it broccoli or the AITC?  Or both?  I continue eating the nasty cruciferous vegetable and my digestion is great.  I’ve also thrown in cabbage, which has BITC and all is fine.

Could it just have been a run of good health or my imagination?  Absolutely either one.  Not exactly a scientific experiment was it?  Had I know about sharktank at the time I would be more inclined to say I was under the influence of positive thinking. But I hadn’t read their research at that point.  One day I had IBS; the next day I didn’t.

I try never to recommend any therapies for fear of hurting someone.  But broccoli?  It seems like low hanging fruit (or vegetable) for those of us fighting for any edge we can get.  You may want to discuss it with your CF team and get their opinion.  In the meantime, I await the continued research of sharktank.org with respect, caution and hope.

p.s. If you want more information, please check out sharktank.org and the following page I found on the Internet (be sure you scan to the bottom for a list of foods:  http://lpi.oregonstate.edu/infocenter/phytochemicals/isothio/

Scariest web site ever? Read at your own risk

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I believe that the world is about to reach peak oil capacity.

I don’t believe we’re about to run out; there will always be oil in the ground, but our quantity of it is finite.  Rather the world’s maximum daily production capacity is about to be reached – the hose can only pump so much and we can’t get a bigger hose.  Unfortunately, demand from countries like China and India will continue to create supply/demand issues.

Here is the link to a web site that, quite frankly, scared the heck out me.  It walks on the extreme side at times, but if you buy its basic premise and science, you’ll start to notice more mainstream news articles about major oil fields in decline, such as Mexico’s, and countries needing to drill deeper ocean wells to locate new oil.

Here’s the site.  Read at your own risk.  http://www.lifeaftertheoilcrash.net/Index.html

Never turn your back to the ocean – the joy of panic attacks

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What a fun day – the panic attacks started early and I tried to fight them off, but there is only so much I could do.  Like a giant wave, one engulfed me in the late afternoon with such an intensity that I thought I was having a heart attack or one of my lungs had collapsed.  I was convinced of it.

I’ll never understand how my mind can overrule itself.  I know it’s possibly a panic attack, but my mind is reading the physical symptoms and telling me something major is wrong.  Had to resort to half a xanax and felt like such a wimp.

That’s the downside of cf and aging – you have to constantly read the signals your body gives you.  Am I SOB?  Is that chest pain? Are all systems functioning properly? There’s a lot to monitor constantly.

Add to that the stress of work today, and “bam” I got churned in the whitewater.

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.