Category Archives: cystic fibrosis

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.

Fantastic Mr. Fox didn’t have CF, but if he did . . .

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My family and I watched Fantastic Mr. Fox Thursday night.  Great movie.  My daughter and I loved it. My wife fell asleep and would have loved it had she stayed awake (living with me is a tiring experience no doubt).

The movie, or more specifically Mr. Fox, reminded me of what it takes to fight CF successfully – you have to be a fox. You have to be crafty and quick on your feet. You have to have animal instincts that constantly monitor changes in your environment (or your health). If you stop being vigilant, you’re liable to get shot by an angry farmer, or stomped by cystic fibrosis.

Also, always have an escape plan.  Mr. Fox escaped some tight situations.  Each time I get out of the hospital, I feel like I escaped the buckshot to live another day.  And I savor life, sweat the little stuff less, and appreciate my wife and daughter even more after these close calls.

Based on the CF blogs I read, there are a lot of foxes out there fighting CF, using any edge they can get to outfox the disease.  It’s not just CFers who have this skill.  Parents of CFers outwit the disease, too, using clever tricks to keep their children healthy. And, like Mr. Fox, these fellow Vulpes vulpes are doing it with style and class.

Long live the fox.

The fear of hemoptysis

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I can’t say that I’d choose hemoptysis over the fear of it – coughing up blood rocks my world and I hate it.  The fear of hemoptysis, however, is starting to impact my life.  The last two times I sprung a leak were related to walking up a hill and stairs.  In fact, the latter happened walking to clinic, which allowed me to pass “GO” and move directly to “x-ray” on the CF Clinic Monopoly board.

Both recent episodes have come as a surprise, as always, but during events that in the past didn’t cause bleeding.

Now I adjust my activities due to a fear of bleeding.  I haven’t done cardio for months; I avoid stairs or walk up them slowly. Disneyland last week caused me great fits of stress when I walked up hills (not as flat I remember when I didn’t worry about drenching Mickey with blood, which would ruin a few photos but end up a hit on Youtube.com).  The thought of bleeding in the Magic Kingdom and disrupting my family trip was a heavy weight to carry around.

I know I’m lucky and have no reason to complain, but isn’t it human to always want more? Or at least to want to be normal and not worry about coughing up blood  in public places?

Genie in a Bottle? No, Broccoli in a Bottle

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Thanks to a twitter friend who told me about vegetable tablets, I discovered my dream supplement – broccoli in a bottle.

Found these little goodies at a health food store today and started taking them with real broccoli tonight.

Soon, I will fill large vats with broccoli and stamp them like grapes into a green paste, which I shall rub all over my body.  Then the Isothiocyanates will overwhelm my cf and I’ll be cured.  Nice.

“Say hello to my little friends – broccoli and coleslaw”

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If you read my earlier post on broccoli, then you know I’ve been shoveling in tons of the stuff.  I also added cole slaw for the cabbage and occasionally cauliflower.  Soon, I will find broccoli sprouts and start eating those, too.

All in the name of searching out sharktank.org’s mysterious Isothiocyanates.  That’s why I’m eating cruciferous vegetables.

I won’t repeat my earlier post.  But here’s the latest. After 40 plus years of taking enzymes, first the powdered form with applesauce when I was a child and now capsules, I can’t find the correct dosage. I’m constipated a lot and my digestion and the results of it have been smaller and perfect.

Last week on a business trip, I forgot to refill my enzymes for dinner and had only three for a large meal.  I thought I would pay the price, but all was fine.

I don’t get it and don’t know if it has anything to do with the Isothiocyanates.  I’m not used to this level of good digestion over such a long period of time.

I’ll be calling my CF Center this week to discuss enzyme dosages.  It’s been a long time since I had that conversation.

Cystic Fibrosis – The Greatest Paint Stripper of All

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CF strips away the stuff I love to do – the simple actions of life healthier people take for granted.  Here’s my “most missed” list:

  • Sleeping flat on a bed, which I haven’t done for 5 or 6 years because of hemoptysis and GERD.
  • Playing paddle tennis at Venice Beach.
  • Walking up stairs and hills without worrying about coughing up blood.
  • Riding a bike fast and up hills.
  • Not thinking about cf, though I don’t remember when that was, if ever.  Maybe, I mean to say that I miss thinking about cf less than I do now.
  • Lifting heavy weights in the gym.
  • Doing fewer treatments each day.
  • Being able to carry my daughter.
  • Skiing.
  • Feeling well more often.

There are probably others, but these seem to matter the most.  One other item I left off the list is adult and has to do with my wife.

Every day some of my co-workers cry and moan about the most inane issues. I feel like grabbing them by the shoulders, staring them in the eye and saying: You don’t know how lucky you are.  You simply do not know how lucky you are.

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/

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.