Monday, June 4, 2012

A Lesson Learned The Hard Way

There are many ways to learn lessons.  When we are little we get our beginning lessons from parents, family members, teachers, and friends.  As life goes on we learn from experiences, repetition, and sometimes strangers can be the bearers of a life lesson.  But the lessons that stick with us are the ones where you seriously f'ed something up.  Hence the title of this post.  I not only f'ed something up but I have since learned from it, am still living with the repercussions of it, and am still berating myself over it.

In order to keep my Crohn's disease at bay I take a medicine called Humira.  Humira is what they call a TNF-inhibitor drug.  TNF, or tumor necrosis factor, is a protein molecule that can promote inflammation in the body which can cause autoimmune diseases.  A TNF-inhibitor drug does what it says, it inhibits these molecules which helps the body to not develop flares.

There are many types of TNF-inhibitor drugs out there such as Remicade, Enbrel, and Cimzia, and they are used in cases of rheumatoid arthritis, psoriasis, and Crohn's.  In fact, some of you might have seen the new Humira commericals or the Enbrel commerical with golfer Phil Mickelson who suffers from psoriatic arthritis. 

One of the differences in these drugs is how they are administered.  Remicade, for instance, requires a visit to the hospital for an infusion.  I'm lucky enough to use Humira which is an injectable medicine I can use at home.  Very quick and convenient. 

When this trip to England came about my first concern was traveling with Humira as it has to be kept between 36 and 46 degrees Fahrenheit.  Not only that, I now had to go through TSA at the airport and customs in Manchester.  How would they deal with Humira?  And so, the research and testing began.

I called TSA and they told me that if I were to travel with an ice pack, it must be frozen completely.  Any sign of thawing and they would confiscate it.  Ok, no problem.  I then called the airline and they told me they would be happy to accomodate my medicine on the flight over to England.  Great.  I also got a letter from my gastroentorologist explaining why I was on Humira and I had my prescription as well.  Things were coming together.

So my mom bought a travel bag that contained removable ice packs and I tested it against the travel bag I already had with built-in ice packs.  After four days we came to the conclusion that the smaller bag stayed cold longer and the ice packs remained frozen longer.  Perfect.

Off to the airport we went.  TSA didn't bat an eye when I told them I had injectable drugs with me.  One hurdle was cleared so I breathed a sigh of relief and got on my flight to Atlanta.  I knew the pack would stay cold during that flight so I didn't bother to get any extra ice for the bag.  And then I was on my flight to Manchester.  I spoke with a lovely flight attendant who brought me ice for my bag.  Dry ice.  Without giving it a second thought, I put the ice in between the two boxes of medicine in the bag, zipped it back up, sat back and relaxed.

Two hours later I checked on the bag and took the ice out since it was nice and chilly.  I left the ice out for the remainder of the flight.  As we were getting ready to land I thought I'd better get a bit more ice that would tide the medicine over while I went through customs, got my luggage, and drove to Chester.  Everything went well.  Until...

...my husband told me that I had probably frozen the medicine. 

I quickly ripped open the boxes of Humira and took out each individual shot (or pens, as they're called) and looked through the tiny opening the pen has so you can see the actual liquid inside.  One was fogged over.  Crap.  One was very sluggish when I turned the pen upside down.  Double crap.  The other two were frozen and starting to thaw.  *%#*&@))  Every expletive known to man came out of my mouth.  Sorry mom.  :(

Rule number one about Humira: NEVER FREEZE IT!

I landed on a Saturday which meant I had to wait the weekend before I could call anyone.  Two entire days of me beating myself up for doing the most stupidest thing on the planet.  They were not good days despite the fact that I was now in a beautiful town in England.

Finally, Monday arrived.  BUT!  I can't call anyone until three in the afternoon because of the time difference.  The people I had to call were six hours behind me.  I decided to walk around town and kill some time getting to know the neighborhood.  I did get my library card which was pretty much the only good thing to come out of the day.  At three I made my way back to the apartment to start what would prove to be an annoying amount of phone calls.

First, I called my pharmacy.  Verdict: they can't ship overseas because they cannot guarantee the integrity of the medicine.  Fair enough.

Second, I called a nurse that works with patients that take Humira.  Verdict: she was dumb.  I'm sorry, but she was.  She told me that FedEx doesn't ship overseas.  Really?  Is that why they have a fleet of airplanes?  I was done talking to her at that point.

Third, I called my gastroentorologist at his office.  Verdict: he wasn't in so I had to leave a message. 

Fourth, I called my gastroentorologist on his private cell phone.  I was desperate!  Verdict: he was on vacation but more than happy to help.  He did manage to tell me that none of his patients had ever done what I did.  I guess I'm a cautionary tale in his office now.  He said he would make some phone calls and call me back.  About an hour later, he did.  He wanted me to speak with the makers of Humira to confirm that I couldn't take frozen and thawed out Humira and I was to call him back.

Fifth, I called the makers of Humira.  Verdict: You cannot take frozen and thawed out Humira.  They've never done testing on it so they have no idea how the body will react to the medicine once it has been affected in this manner.  Plus, the integrity of the medicine has been compromised so it would be like taking a placebo.  Useless.

Sixth, I called my gastroentorologist back.  Verdict: he was in contact with his Humira representative to see if he could get some samples for me.  He asked me to call his assistant and she would help me in getting these.

Seventh, I called the assistant.  Verdict: one of the sweetest people I have ever spoken to and she was more than happy to help.  I can't tell you how nice it was to come across a helpful and cheerful person while in the midst of a crisis. 

After nearly four hours of phone calls, I cried for an hour.  Okay, I may or may not be able to get samples.  If I did, how would they get to England?  If I didn't, how much time could I go without Humira before having to go back home to get more?  This was Monday.

On Tuesday my gastroentorologist called to say that samples were on their way and if I could have someone pick them up, they were mine.  I'm not a religious person but I thanked whoever might be up there watching us.  My mom was now on the case of getting the samples.

The issue of getting them to England was also resolved.  But they were coming to London so my husband and I would have to drive over to get them.

Last Thursday we left for London, picked up the medicine, met up with some friends, and in 24 hours we were on the road, back home to Chester.  And the medicine was good. 

Bad news: I take a shot every other week so after taking a shot on June 1, the next one is due June 15 and then I'm out of medicine again.

Good news: There is more on the way.

I cannot even begin to thank everyone that has helped me with this ridiculously crazy matter.  There are friends out there to whom I owe big favors.  And not to mention my mom and my husband.

What did I learn from all of this??  DON'T FREEZE HUMIRA!!!!  Lesson learned.  I hang my head in shame.

To all of you out there that take this medicine and need to travel with it, it was pretty easy to get through TSA and on the airplane.  Just don't take the dry ice the flight attendants want to give you.  Ask for normal ice.  And to all of us out there that take TNF-inhibitors, may the day come when we no longer need these drugs because maybe, just maybe, someone has found a cure to autoimmune disorders.

And with that I wish you all good health.  And be sure to thank the people in your lives that you know would go that extra mile for you.

8 comments:

  1. Oh Rebeca! The adventures you're already having! I'm so glad everything worked out and that you do have such a wonderful doctor!!! E-mail me his name and address, and I swear, I will send him a thank-you note! :)

    I think you should start writing all these blog posts as essay entries, or something! Start writing your memoir, maybe!!

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  2. Good to read your story has a happy ending. Great post! Thanks for sharing.

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  3. Hi Rebeca,
    I'm so sorry to read about your predicament. By your fourth point you had me in tears knowing how frustrating you must've felt. Your doctor, his assistant and the Humira representative sound like gems. And your mom and hubby are wonderful too.

    I was relieved to read everything is now falling into place with your medication--and happy you got a library card.

    Donna

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  4. Thank you all for your great comments. I'm very lucky to have such great people in my life, the three of you included! :)

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  5. Wow that sounded like quite the ordeal. Good to be aware of, I will be traveling with Anakinra next year and a little nervous about it as it is a daily and I will have over a dozen pre-filled syringes with me.

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  6. Hi Rebeca,

    I know this is awhile after the original post, but I am curious...how did you get the samples to the UK from the US? Just used Fed-ex? And no issues with customs? I am looking to get my Humira filled in the US and need to send it to the UK where we now reside.

    Thanks.

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  7. How did you get the new Humira to England? I will be traveling to Europe for an extended period of time and am trying to figure out if I can send myself Humira from the U.S... Thanks so much!

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  8. I am wondering what the people above are wondering in which there has been no response. What was the specific route in which you were able to have Humira mailed to you overseas? Please and thank you!!

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