The danger of travelling

My life has gotten to be a lot of work in the last couple of years.  My chronic tendency toward dehydration via third spacing means that I’m at high risk for repeat bowel obstructions.  I anaphylax a lot, sometimes without a trigger.  I have a colostomy.  I am pretty much guaranteed to have a variety of medical supplies, syringes, IV meds, epipens and alcohol swabs on me at all times.  I finally have a reason to have a huge purse. 

I am good at advocating for myself and getting my needs met, in all venues of my life.  I knew that travelling would exercise those skills, but I honestly didn’t worry about it very much.  I am very, very familiar with FAA and TSA regulations and how they apply to someone travelling with a chronic illness/ medical device/ lots of medication.  The bottom line is that they are required to accommodate you provided you have the appropriate documentation.  Which I have.  In spades.
I called my airline last month and explained that I had mast cell disease and required several accommodations.  These accommodations included a wheelchair from ticketing to the gate, gate checking my larger suitcase (which also contained medical supplies), boarding early so that I could administer IV meds and set up my infusion, and that I needed to infuse for the duration of the flight.  The person I spoke with was extremely helpful.  She asked some questions about my infusion pump and the volumes and types of medications I would be bringing.  She asked that I bring a letter from my treating physician stating that these medications needed to be with me while travelling and that I needed to infuse for the duration of the flight.  No problem.
I arrived at Logan Airport and had a very painless experience.  They opened up all my bags and swabbed my hands and my meds for explosives. They patted me down.  They were very courteous and helpful.  When it came time to board, I was the first one on the plane and was happily infusing fluids when we took off.  It was really easy.
Then I arrived a week later for my return flight and it was a mess.   It made me really mad, especially in light of my previous positive experience.
The first problem was with gate checking my bag.  I explained to the agent that it had medical supplies and she tagged it appropriately and said it was all set.  Then another agent came up to me and told me that I couldn’t gate check my bag because it was too big.  I told her it contained medical supplies.  She argued with me.  After about two minutes, I told her again that it contained medical supplies.  “Oh, well you didn’t tell me that!” she exclaimed, rolling her eyes.  Whatever, lady.  Gate check my bag.
I got on the plane and pulled out my stuff to give IV meds.  A flight attendant came over and told me to put my backpack containing my infusion pump and meds under the seat.  I told her that I couldn’t because it was going to be attached to my body and I didn’t want there to be tension on the IV line.  I told her that I had spoken with the airline and that the infusion pump/meds are not considered luggage and can be with the passenger in their seat.  “The FAA isn’t going to let you do that,” she said.  I explained that I had infused on the flight from Boston to Seattle.  I offered her documentation and she talked over me.  “Well, you can let me know when you’re done and we’ll take off then,” she told me.  “It’s an eight hour infusion,” I told her.  She shrugged and walked away. 
A few minutes later she came back and told me that “the FAA sees things like this in black and white, and [I] can’t expect them to see things in grey because of people like [me.]”  I didn’t reply and she said, “I’m trying to be sensitive here.”  I do not think that word means what she thinks it means.
So I didn’t start infusing until I was flying.  This is important to the story.  When I started infusing, I noticed there were a lot of bubbles in the PICC line extension.  I realized that the extension was cracked and air was getting into the line.  This is very bad.  I stopped the infusion and had to trouble shoot the situation at 30,000 feet where I couldn’t just call my IV service and ask.  The fact that I couldn’t start infusing while on the ground turned a manageable situation into something very scary. 
While I was trying to identify the best course of action, the lady came over and asked if I felt okay.  I told her that I feel like I always feel.  “Do you need help?” she asked pointedly.  I just looked away.  Her behavior was making me mad, which was causing me to react while I was managing this situation.  I was really not amused.
I ended up disconnecting my extension and connecting the infusion directly to the PICC line without a clave to keep the end of my PICC line sterile.  This required some changing of hardware in the obviously less than sterile environment of an airplane.  I kept the clamps on the line and did not infuse fluids, which guarantees me a bowel obstruction in the next day or two, which guarantees me anaphylaxis.  I bought Wifi and messaged all of my PICC knowledgable friends because I didn’t know what else to do.
I’m now going to have to have a conversation with my doctor about this in the morning and the line will almost certainly be pulled and a new line put in because of infection concerns.  After I had to have IV meds administered to me by my friend (since I can’t access my PICC line without an extension), I put the cap directly on the line.  It is unusable until I get someone to come out to my apartment and fix it.  Thanks, airline lady!  I was so hoping to have more surgery this summer.  I also really enjoy having a line for emergency meds that I can’t use. 

The really unfortunate part of travelling while you’re sick is that it doesn’t matter if you know your rights if everyone else doesn’t know them too.  This woman’s behavior put me in danger.  It remains to be seen if I get a central line infection, but at the very least, she made it a serious possibility.  I am going to get a bowel obstruction because of this situation, which is massively painful and causes anaphylaxis.  This is unacceptable.  I don’t want this experience for anyone else. 

I am reaching out to the airline and hope they will do something about this.  I will keep you all posted.