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

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?

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.

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

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?

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

Here’s the link:

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.