REINA SOFIA HAS CF

 

I'm sorry but I just wanna tuck those puffed out
curls behind her ears each & every time I see her.

In case you're not up to speeed on your Who's Who of reigning monarchs, let me intoduce you to Reina Sofia.  Reina Sofia means a lot in this country. First off, she's the queen of Spain and a pretty likeable gal from what I can gather although I do think it's high time she updated her hairstyle. But let's face it, when you're the queen you get certain perks no matter what your hair looks like.   As you probably guessed, Reina Sofia has a lot of things named after her: streets, parks, airports, and tons of buildings. Even the hospital that we go to in Cordoba for our quarterly CF clinic is named for Her Majesty. Hence, the title of this post. No, the queen of Spain does not have cystic fibrosis however the hospital named for her does~an entire unit in fact.  And that is where we found ourselves earlier this month.

Two weeks post visit and I'm now cursing myself for not having taken better notes because quite honestly, it's all kind of a blur.  Three squabbling kids squished into a doctor's office has that effect on me, ya' know?   But there were some noteable differences that are worth a mention.

1.  THERE IS INDEED AN "I" IN TEAM  


Dr. Cowboy caught the wheeze and prescribed
one puff of Seratide before each vest session
over a three week period.

Dr. Cowboy is our pulmonologist.  That's not really his name but whip out your Spanish 101 notes and I'll bet you can figure it out.  Anyway, he's like the captain of the CF team for us; the main guy we see and the one who runs the show.  He interviewed us and logged copious notes into the computer about the kids' health history and then he sat down with each of them to take a listen.  When he was finished he handed me two sealed medical packages:  the swabs for their throat cultures.  At first I was a little taken aback.  Me?  I have to gag them?  You can't be serious, I'll screw it up.  I'll puncture a lung or pierce a vocal chord.   Thoughts like these raced through my mind while my brain was trying to translate, that's your fucking job, buddy minus the obscenities into Spanish.  Alas, no translation needed.  We were to take the culture kit down to the lab.  The kids would get their throat cultures done there.  Hmmmm.... interetesting, I thought.  And then we were given a two inch stack of medical orders and told where to go to get each one done. 

So much for getting out of the
'homework' assignment. 

Our visit with Dr. Cowboy was a quick one.  But our time in the hospital, not so much.  The time we would have spent waiting in our old CF clinic routine was spent walking long, white corridors looking for faraway laboratories and hidden specialty offices.  I still haven't figured out how all the players come together - but for the time being it appears that technology links them.  When we entered the office of the GI doc, the first thing she did was pull up Dr. Cowboy's notes from twenty minutes prior.  She did her own dog and pony show, entered the new data and gave us our homework: collect three day's worth of fecal matter for each child and bring it back so labs can be run.  Oh but Good Doctor, they're pancreatic sufficient!  Best check those notes again....
    

2.  TAKE A NUMBER
Spain will forever be the country of 'manana'.  Why do today what you can put off til tomorrow?  I'll never get it, being of good German stock this mindset drives me nuts.  As we were running all over Reina Sofia (the hospital not the Queen) there arose a common theme:  la vuelta (the return).  Every stop was just that, a stop.  We took our number, waited the fifteen minutes to be seen and when it was finally our turn we were able to go in to make an appointment to come back.

Labs?  See you on Friday morning!
GI?  Catch you after labs!
Radiology?  We'll be there..how's Friday for you?

On one hand it was frustrating to me that clinic seems to be so compartmentalized here; each entity doing it's own thing on it's own schedule and I had to remind myself that it's not wrong, just...different.  Yet on the other hand I left each doctor feeling as though we were in really good hands, dealing with the experts in their field which helped me to swallow the inconvenience pill that comes with living in a pueblo 45 minutes away from Cordoba.

3.  OUR FREE LUNCH
Dr. Cowboy was very interested in how CF clinic was run in the States.  He asked about the frequency of our visits, which turns out to be the same here - every three months unless something comes up.  He asked about who made up the members of the care team, which again is much the same except there is no pharmacologist on team here.  And he asked about medications and the protocol in using them.


Then, very slowly he leaned over and said, "I want you to understand something very important.  Very important."


I was on the edge of my chair.  Charlie and Lola were taking turns jumping off of the exam table and Henry was unrolling gauze pads by the meter.  We were about to be denied, banned or exiled I wasn't sure which but it was serious from Cowboy's tone.

"You will not pay for medication here.  Do you understand?"


Uhm, no.  Actually, I don't because it's like a billion dollars back where we live...you know, in the Land of Milk and Honey where everyone is blond haired and blue eyed and drives a little red Corvette.  "Excuse me?" I managed.


"Cystic Fibrosis is a chronic and life threatening disease.  You will have a standing order at the hospital pharmacy for each child's prescription needs."

"How much is the copay?"


"The what?"


"Copay,"  I repeated.  "The part that we are responsible for."

"There is no copay for these medications.  As you run out, you will come in to Reina Sofia and refill your order.  We're not here to make a profit.  We're here to treat a disease."

I was speechless but managed to kick Joe's foot, my signal for him to confirm that I hadn't misinterpreted anything.  We would later learn that prescription coverages vary depending upon which region in Spain you live in.  In Andalucia, the regional government has funded a healthcare plan that covers prescription costs for chronic diseases such as cystic fibrosis.  Not funded in Andalucia's plan however is The Vest.  Patients here use other pep devices such as the Acapella and the Flutter in combination with manual cpt. 

Having access to free medication almost seemed too good to be true.  Was Hypertonic Saline available?  TOBI?  Pulmozyme?  Azithromycin?  When should we expect to start Charlie on the next batch of drugs?  I asked Cowboy what our protocol would be under the team's guidelines.

"Your children are uniquely yours.  Charlie is different from Lola just as Lola is different from Charlie in spite of them having the same genetic make up for this disease," he began.  "I do not feel comfortable starting either Charlie or Lola on a new drug just because they have a birthday.  I want to know first how their bodies are handling this disease, what it looks like for them.  I want to study their chest xrays, review their labs and get a baseline of where we are now before we jump into a change of plan."

I was silent, liking what I was hearing but still a bit paranoid that we might miss out on a more preventative approach to their care.

"If you're concerned about the availability of these treatmenet options, don't be.  We have access to them when we're ready for them," he continued.  "Let's keep a few things in our back pocket for the time being while we figure out where each child is.  Is that fair enough?"

"Yes.  Yes, it is."  We nodded in unison and explained to Cowboy that while we want to be very aggressive in a proactive approach we struggle with the possibility of over medicating the kids and as a result are very much interested in trying a more holistic approach before jumping immediately to drugs.  Cowboy listened, we talked some more and closed things by confirming that clinic had our contact information for the pending lab results.

By the end of our first clinic visit, I felt good with where we had landed.  I felt like Cowboy had listened to us, heard us and in the end it just felt like a good fit.  As with every clinic visit though, I was completely fried.  Clinic visits take a lot out of me physically, mentally and emotionally each and every time.  There's the early rising, the anticipation, the planning - so much going into it all to make it as worthwhile and thorough for the kids as possible.  And in spite of the differences, which were really just that - differences - no better  no worse, there was a constant.  That is to say, the constant of knowing that the team members who are dedicated to helping us fight cystic fibrosis for the sake of our children want to give us The Best.   Make no mistake, I'm not talking the best American care or the best Spanish care but rather The Best CF Care. 

And for that we are very, very grateful.