Living in the Limbo

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Happy Thanksgiving! Leave An Empty Plate!

The weekend before, 48 hours before, and the day before, I had to call TSA to prep them for my travels. I was really nervous to travel because I was afraid they’d turn us away or we’d miss a flight because of the TPN.

 

I had also packed with me a small folder of medical packets and letters from my doctors in case I ended up in the ER during my visit in Austin or if any of the airports had any questions.

 

On November 23rd my dad and I woke up at 2:34a.m. and headed for the airport at 3:30a.m. We had to book an early flight because it needed to be at a time that I didn’t need to start thawing my new bag of TPN, and early enough that it didn’t hit my change time.

 

In Boston we went up to the TSA guards and let them know I wanted a Passenger Support Specialist (PSS) but they didn’t have one in the airport at the time. They just had me go through the x-ray with my backpack and then swabbed me for drug tests at the other side. It was very simple, and they just let us through.

 

To board the plane, we were under the first to board since we had to fit my medical bags in the overhead bins. I explained to the flight attendants about my condition and that my bag needed to stay in my lap since it could slide under my seat accidentally and rip out my PICC.

 

Everything went pretty smoothly, and they didn’t even ask to see my pump documentation which made things really easy (read more on “Traveling with TPN” in my ‘Advice & Thoughts’ blog section).

 

I arrived in Austin at 11:30a.m. (CST) and I was so excited to see my brother. He was arriving in from a flight coming from California an hour later so my dad and I waited in the airport.

 

My brother’s flight finally landed, and I got to see him for the first time in a year. It was so crazy to see him especially with the TPN and everything now.

 

We took a Lyft home and got to see our dog and I immediately fell asleep on the couch from the busy day.

 

I had set all these alarms on my phone for my TPN change time since there was a time difference, and my pump would end and hour earlier.

 

My carry-on makeshift ice bag worked out and when I had arrived earlier on in the day, the ice we brought was still nice and cold along with the TPN. My mom had prepped space in the fridge in advance, so my dad loaded them in.

 

On Thanksgiving, I had a great day spending time with my immediate family. I was feeling pretty nauseous that day but luckily had all of my medications with me to help with my symptoms. I had also taken some Carafate since the evening prior I had some soup (I had my mom order the same brand I had been eating in Boston).

 

It was a bit tough not being able to eat anything during Thanksgiving but luckily my family never cooked much anyways since it was normally just the four of us. I think also me being pretty nauseous all day helped curb any potential hunger cravings I might’ve had.

 

Amongst all of the family fun, I forgot to take out my TPN to thaw so when I reconnected in the evening I was shivering. The best way I can describe why it has to thaw is, it’s like ice running through your veins. Chilling and sometimes painful.

 

On November 26th my family and I went to an outdoor shopping mall for some of the day to walk around and then in the evening we had a gingerbread house competition. We watched the “Great British Baking Show” every night, so we wanted to put our viewer skills to the test. After we were done, I made a gingerbread village for our houses to reside in.

 

November 27th, I was woken up from esophagus spasms in the morning and continued having bad spasms for the rest of the day. Took lots of nausea medication and muscle relaxers. Spent more of the day with the family enjoying our time together and playing board games.

 

That evening I hugged my brother tight knowing that I was not going to travel to Austin again because of how much prep and stress went into traveling. My mom and I said a temporary goodbye since we knew she would be coming to see me in Boston in April to help me move apartments.

 

My dad and I were ready to head back to Boston with a day of rest before my surgery.

 

On November 28th, TSA Cares Austin called me to prep a PSS to meet me at the airport. I had to call a couple times since they requested me to so we could meet up inside.

 

The airport TSA line was all the way out the door at 5 a.m.! It was insane!

 

I found my PSS and they were so incredibly kind. They brought us all the way ahead of the line, but I was stuck being checked for so long!!

 

They seemed to be really confused with the TPN and kept asking to test the liquid inside of the TPN bag. I was really hyper focused because there were 4 TSA agents checking all my bags at the same time, so I was trying to make sure no one was poking the bags making them unsterile. At the same time of watching all of them, I was being checked and also asked questions at the same time while people in the TSA line were staring at me.

 

It was definitely tough, and I was trying to not feel embarrassed while they examined my PICC site and bags.

 

They took out all of my TPN bags out of our makeshift ice “cooler” suitcase and swabbed the outside of each one.

 

When they were all done, my dad and I had so much to put away.

 

When we got to the plane, we alerted the gate agent we would be boarding with the disability line. I got on the plane and explained to the flight attendants the same thing I told the ones in Boston.

 

However, they were very confused, and we ended up taking off slightly late because of how much hassle the TPN bag was! They kept getting flight attendants and then going to the front of the plane and then coming back to ask me more questions.

 

It was really taxing, and I wanted to just be home and resting.

 

When I finally made it back to Boston, I took a 5-hour nap. I was so exhausted from just the energy it took to be alert and answer everyone’s questions. It also took so much to ignore my symptoms to focus on the day so my body just kind of collapsed.

 

That evening my friend and her mom came over and we played an escape room box the whole evening with everyone in my apartment and it was so much fun. We all learned we aren’t great at escape rooms :-).

 

On November 29th, I spent the day resting in bed watching movies to try and distract myself from nerves about the surgery the next day. My nurse came by and changed my last dressing with my PICC line.

 

Off to bed I went, feeling ready-ish for the surgery the next day.

Read about the central line surgery in the article, “Central Line Surgery!”