April 20, 2011


Not unlike the rest of the CF world, we have our quarterly clinic visit etched in gold on the kitchen calendar that hangs off the side of the fridge.  It's like a date with the Pope; nothing gets in the way of it and come Hell or high water, Joe and I are both in attendance.  We've been at this for three years now.  Four visits a year times 3 years makes for a dozen trips down to the hospital to meet with our team.  It dawned on me a couple clinics back, that I have a ritual that has preceded every single clinic visit:  BitchFactor 10 - á la PicklePits of course.

The closest thing I can think of is a severe case of PMS.  You know, the kind when your husband throws out an innocent, "Gonna run today?"

And you bite his face off with, "You know, I really don't appreciate your snide comments about my ass, Mr. Man-Tits!  I've birthed THREE of your children.  I've earned these curves..."  and then you run in the bathroom, slam the door and cry your eyes out because your jeans are too tight (again).

Each x-ray is carefully
scrutinized for any 
changes from one year
to the next.  Changes
mark lung damage &/or
progression of disease. 
The effects of lung
damage in CF are

Results from the annual
blood draw are used to
chart vitamin  levels. 
This data guides us in 
better understanding
the current status of
the kids' GI tract.   
So BF10 starts to brew about two weeks prior to clinic and always ends in much the same way:  a fit of tears.  Once the tears come and go, I'm good.  The storm pushes through and The General is back in town with her game face on in time to greet our team as they march through the revolving clinic door. We had a lot riding on this April clinic.  It would be our annual visit; the wide angle shot at the kids' health across the scope of the past year.   Scheduling the annual visit takes a bit of choreography since I like to get the x-rays and labs done in advance but as close as possible to our visit with the team.  It's my way way of feigning control in the face of so much uncertainty; a snapshot of the here & now so I can heave a sigh of relief knowing that we left no stone uncovered and our team is seeing the whole picture for what it is as opposed to what it was

Pulmonary Function Tests (PFT's)
are new for Charlie.  He does 
PFT's prior to each clinic visit
now.  PFT's measure how well
the lungs exhale.  We are working
with Charlie to help him in
perfecting his technique in hopes
of providing our team with the
most accurate picture possible
of his current lung function. 
 Yet there was one thing missing:  my meltdown.  I had kept it in check when the respiratory tech took a phone call in the middle of Charlie's PFT's.  I even threw a bone to the phlebotomist, smiling when she hit vein on the first try, as if that were even an option after the last time.  I was so busy chasing appointment times all over town that I hadn't had a second to fear, let alone think about what was looming. 

At exactly 7:48AM, twelve minutes before heading out the front door on our way downtown, the phone rang. The coordinating nurse from clinic was calling to announce the absence of two team members at our annual.  Would we like to reschedule?  Like a puss loaded zit begging to be popped, came the rumble of Mt. Vesuvius from within.  Of course I wanted to reschedule but guess what, I'd already taken the entire day off of work so it was a little bit late for that invitation, thankyouverymuch.  By the time we were out to the car, my heart was racing, my stomach was turning and I was seconds from blowing.  Poor Joe, he was about to be blindsided, oblivious as to what was about to hit him. 

"What in the hell are you doing?  The interstate is that way!  Oh no you're not!  There's no time for Caribou...Jesus, Joe.  Come on!  We've got Clinic in less than 30 minutes for God's sake.  How can you even think of coffee right now?" 

My husband didn't have a prayer.  The next 7 miles would be the longest of his life.  Kids in the back fighting for the remnants of the last blueberry bagel, Henry babbling nonsense at the traffic whizzing by and me unraveling in the passenger seat, tears streaming as he sped down I-80. 

Welcome to BitchFactor 10, my love.  Buckle up it's gonna be a bumpy ride.

I'm sure the 10 minute drive felt more like 10 hours for the poor guy; yet he took it like a man, a decaffienated man at that.  I guess after all these years together he's used to my neuroses.  Well that or he just knows better than to try to stop a train wreck with his bare hands.  By the time we got the car unloaded and stuffed our fivesome into the elevator, I was back in operational mode, just in time for the party.

Respiratory Therapist
Social Worker

As always, hindsight is 20/20 and in looking back, I see the elements that made up that perfect storm:
  1. Charlie's PFT's had dipped since his last clinic and I was stressed out about it.  Was he growing a bug?  Were we going to see evidence of scarring on his chest x-rays? 
  2. Vitamin levels at our last annual were a bit off - nothing to warrant a GI consult but something to keep an eye on.  With no dietician or GI present at this clinic visit who was going to interpret the lab results?  Leave the lungs to the lung doctor and the vitamins to the dietician.  How was I going to cover this base without her or our GI guy?
  3. I hadn't had a good run in a while which meant I hadn't had a good cry either.  I usually have my preclinic breakdown between miles 3 and 5 of any given run.   So not having a good, long one messed that up big time.
Yet in spite of everything, it all worked out.  Our pulmonologist was pleased with both kids' xrays.  I leaned in (probably a little too) close over his shoulder and made him give me a personal tour of each lung.  No scarring.  No striations.  NO CHANGE.  I didn't believe him at first and pestered him for more detail, more proof that my kids were okay for now.  The smile, the reassurance; that something no one else could give me but him, not even my husband.  Those couple of minutes we spent pouring over the x-rays meant everything to me.  He chuckled saying, "Really, they look clean.  These are great, look at all that black, all that air space.  It's really good, I promise."  I reached for him, wanting to wrap my arms around his neck and just hug him tight.  But I didn't, my fingers left instead to just squeeze the cold plastic arm of his chair.

The pharmacologist read vitamin levels and concurred with the pulmonologist that all levels except Vitamin D were well within normal range; the vitamin D low most likely due to the dark winter months so more whole milk for now. 

Just prior to leaving some three hours later each kid gave up a nice juicy pflegm ball that would be our ticket out:  throat cultures.  We would get the call four days post visit that all was well.  No pseudomonas.  No B.Cepacia.  No funky bugs. I guess in the end that's all I wanted:  the assurance that comes with clean bill of health.  Isn't that what we all want for our kids? 

So I'm good now, good for the next three months. 
Until the next clinic visit.
Until The General is back in town.


  1. Ah, my husband would agree that this cycle takes place for CF patients too. I've had monthly appointments for most of the past year, so I've been riding the BF wave for a while now. Throw some real PSM in there and there is never a dull moment. No wonder his hair has gone almost completely gray recently...

  2. Love this. YOu portray it well for all us cf mamas. You have a give for writing. Thanks for sharing.


  3. Here's a question for you Stacey: At what point do you remember passing over to the BF side of preclinic woes? Were you in your teens? Twenties? Earlier? Later? Right now the kids are so young it's kind of like a field trip except with a bipolar chaperone. I just wonder if and when this cycle becomes apparent to the patient. Make sense?

    @ Sandy: Misery loves company, honey. I'm glad I'm not alone in my neuroses. I mean that in the kindest way of course :-)

  4. Sounds so stressful. I can barely hold it together for the daily stuff, throw in a CF appointment and somebody would definitely be losing an eye. And most likely it would be Javi. I'm thankful for their clean bill of health.

  5. So glad everything looks good. You go get 'em, General!

  6. Great post. Glad the kiddos are doing so good. Sounds like you are working hard to stay that way. Much love, Colleen

  7. I will have to confess, I would be pitching fits too in a similar situation....honestly, I am sure I cannot even imagine the scenario, but I cannot imagine myself in a state that even approached calm.

    FANTASTIC news that everything came out so well. FANTASTIC!

  8. And after all that I sure hope you treated yourself to a tall glass of whatever your fancy, because girlfriend, you deserve it.

  9. ..and bought el marido a strong cup a joe.