Mice with CF – Lucky bastards

I’m getting pretty tired of “mice with CF cured” stories.  How about some “humans with CF cured” stories?

Actually, I’m grateful these mice are taking one for us humans.  I just wish the drug process would move faster.  Take Cayston, for example.  It’s the first new inhaled drug for CF in 10 years.  10 years!  We need more drugs and we need them now.

In the meantime, thanks again to the furry critters who’ve saved me from taking a drug that would have made my pancreas melt or my lungs burst into flames.   They’re the unsung heroes of the day.  🙂

Head/chest cold and root canal

I had a root canal a couple of weeks ago and went in for the final appt. today.  Also, have the mother of all chest colds, which means I may have to go in the hospital.  Cold is creating a festive environment for the bacteria.  I was already on cipro for hemoptysis, so I may get luck and it will stop the bacteria.

Felt like I was in the dentist chair forever today.  Worried about being prone and coughing up blood, which would have been quite a surprise to the dentist.

Only time will tell which way the cold goes and if I end up in the big house.

Getting old with cystic fibrosis

I am in no way complaining about getting old with cystic fibrosis – I’m the luckiest guy in the world to have survived for so long.  I am, however, complaining about growing old with cf and the ailments that come with aging.

Case in point: Last week’s root canal.

Two weeks ago, I coughed up blood.  The doctors put me on cipro.  The blood went away but I started getting the chills and feeling feverish.  I started wondering if the cipro was working.  Then the tooth pain came, which led to a root canal.  Overall, I feel better, but not 100 percent yet.  Is it the root canal infection or a cf infection?

That’s the hard part of growing old with cf – interpreting the signals of not feeling well.  What’s cf-related?  What’s conventional-illness related?  Having this disease in like having two minds.  All information must be interpreted through both.

Going on vacation?  One mind says “great.” The cf mind says “bad idea, plane flight, germs – all leading to a hospital stay in another state or country.”  Planning a month out causes the same two-mind thought process.  Will I be in the hospital?  How will I feel in a month?  It’s so hard to tell the future beyond this moment. There are very few trends to rely on because my health can change overnight.

I wish cf was an exact science.  Black and white.  However, its symptoms mirror other common ailments at times, and it’s hard to know if it’s cf or something else.  Think about the medical elements that have to line up to determine if you’re having an exacerbation.  Fever? PFTs? Weight loss?  SOB?  Appetite? If they all line up negatively, like a slot machine showing all cherries, you win a trip to the hospital.  Jackpot.

The hard part is when they don’t all line up, when three out of five go one way, but the other two go the other way.  You’re left to gut it out and wait.  Perhaps, try some cipro.  Then a root canal mucks up the living experiment and you’re left to consider another variable.

No complaints here.  Just a lot of thought.  How many cherries will come up tomorrow?

I’m mad as hell . . .

In the movie Network, Peter Finch screams, “we’re mad as hell and we’re not going take it anymore.”

I’m mad as hell that I have cystic fibrosis.  Unfortunately, I have to learn to take it.  If I started screaming “I’m not going to take it anymore,” I’d only really have one option.  And, though I’ve given much thought to that option, I will not be exercising it at this time.

So, I may be mad as hell, but I have to take it.  I have no choice. Yet.

The Truth?: Searching for symptoms on the web and going to the doctor

Having cystic fibrosis goes hand in hand with searching for symptoms health information on the web.  At least for me it does.

When my health goes south, I head to the Internet.

This afternoon, it felt like a I had a fever, but my temp was just a hair higher than normal.  I was burning up and my eyes were puffy with shiners. Hospital time?

It’s hard to figure out what’s wrong using a search because I can always find some poor person who has had the exact symptoms I’ve typed in.  It’s too easy to prove any medical claim using the Internet because so much “truthiness” exists and someone at some point has had exactly what I’ve typed in.

So, I had to trust my gut and figure that the cipro might be causing some problems.  By narrowing the search with key information, I found more realistic answers for my situation.  Is this any different than a visit to the doctor?

An Internet search for health information matches my doctor visits: The better the information I supply, the more accurate the diagnosis.

Call me Lemon

I used to think the President was where the buck stopped.  Now, after the health care debacle, it’s congress who really has the power to do nothing and get paid for it – not to mention they get government health care, which just pours salt in the wound.  How many of them really care anymore about the people they represent?  The people who are declaring bankruptcy due to medical bills.

My new tiered system for prescriptions came in the mail today.  Though I am grateful that I have insurance, the company is going to make me pay for having a genetic disease, cystic fibrosis, which was beyond my control.  Every nickel, dime and dollar they can squeeze from me – that’s the goal.  They find creative ways to make me pay more,  to help them make a larger profit.

Call me Lemon.  I’m being squeezed dry.

The joy of hemoptysis

Coughing up blood derails me.  Two days ago I felt great.  Now I’ve got hemoptysis.

Such a cruel disease.  It teases you with good health for a few days and then in a blink, takes it away.  I almost felt normal for a couple of days.  Not anymore.  Back to having cf.

Not much else to say tonight.  Time to start cipro.  Yay.

Every journey begins with a first misstep

I’ve run conference calls where I’m the only one speaking to a group of competing vendors, who stay quiet in a game of business poker.  It’s feels uncomfortable to speak and share project information with no one else speaking at all.  Did they hear me?  Was I clear?  Do they think I’m . . . . I just move forward and quiet the little voice in my head.  I’m doing that now.

This blog feels a little like those calls.

And, as no one is speaking back at this point, I can pretty much say . . . anything.  Great.  How’s this:

I have cystic fibrosis.  I’m in my late 40s, have a wife and daughter and I am the luckiest person alive.

I have survived a genetic disease that was supposed to kill me years ago.

My story is not unique.  There are others just like me.

However, for each of us who has survived cystic fibrosis, there are others who have died and made us (mainly me) look more heroic than we really are (than I really am).  They are the heroes, the children lost to cf and the parents who witnessed their suffering. I don’t use the word hero by accident.

Can you imagine being 10 years old and spending your short life running out of breath every day?

That’s why I say I am the luckiest person alive – it’s by luck that I’m here – with a catch. Much of the luck happened to me; but some of it I made.

So, I have three goals for this blog:

  1. Find the humor in this horrible disease. (Is it possible? We’ll see. Thank you to the Unknown Comic, who I parody here.)
  2. Share the lessons I’ve learned (the ones that haven’t killed me)
  3. Share the daily challenges of having cf.

Thank you for reading.  I know you have other choices and ways to fill your time.