I left you on that first port infection cliff hanger, so that’s where we’re starting today! In the summer of 2011, after my senior year in high school.
Central line infections are no joke! They can lead to sepsis and even death if not treated properly. I had gone five years without getting an infection, which is pretty impressive. But this led me to believe there was no way I could get one even though I’d been warned about them since the first day. Chills, fever, body aches – this list sounds a lot like the symptoms of many illnesses, doesn’t it – especially the flu. The kicker was that my “flu” only happened at night when I was infusing TPN. I should have realized way faster than I did.
I finally connected the dots, accepted what was probably happening and ended up in the ER. They immediately started me on antibiotics. After several days, when my cultures (blood tests that are observed for several days to see if they grow bacteria) came back clear, I was sent home on IV antibiotics.
My doctors were concerned the infection would return since my port wasn’t changed and infection bugs love to live in the little hubs of ports where there are lots of nooks and crannies to hide. Unfortunately, that happened about a month later. This time, they took my port out, placed a PICC line while my system got cleared with another round of IV antibiotics at home. Then, a week later I got a new port.
My first experience with the PICC line was absolutely hysterical. I acted as if the arm that it was in didn’t even exist. I would only wear shirts that completely covered it (it was in my arm and it was the dead of summer in Texas.) I absolutely despised it. Looking back, I think a lot of it had to do with the fact that I knew it was temporary and I was going to go back to the routine of having a port soon.
I left for my dream school in Portland on August 9, 2011! My mom flew to Portland with me and helped decorate my new apartment all cute! We had so much fun searching through all the funky second hand stores in town. We put shelf paper in the cabinets. Bought trashcans and cleaning supplies and all the other fun things that come with moving halfway across the country!
One of the funniest things that happened was when we first got into the apartment and my mom says, “Well of course they would crank up the air conditioner so we’d have to pay for it!” while looking at a funky thermostat that was set on 50 degrees. We started looking around and realized there was no air conditioner! It was the thermostat for the heater! In the middle of August, we didn’t need the air conditioner? Two Texas girls on the west coast could NOT wrap their heads around that idea!
When classes started, I scheduled 15 credit hours. I had three studio classes – drawing, design and fibers and two academic classes – writing and art history. I was thrilled to be there! I loved everyone around me and the inspiration that lived at this new place.
There was a small on-campus restaurant where they pretty much knew what you were going to order every day. There were only about 150 students on the entire campus, so it wasn’t all that tricky to keep up with, I suppose. But they had the best bread and butter I’ve ever eaten!
College life was full. I learned about public transportation. I spent tons of time at Powell’s Books. I worked one night a week at the tiny library on campus. And I spent a lot of time terrified of our upstairs neighbors with my sweet roommate, ha! My friend, Jordan, and my little brother, Carson, came to visit. I met some of the sweetest people around and I found my favorite teriyaki chicken in all of the land.
I quickly realized the problem was that my body could not keep up. Art school was really intense. You pour the entirety of your brain energy, along with your emotional and physical energy into your work. Soon, I found myself in the main office asking to drop drawing. That would eliminate a huge chunk of stress. Next thing I knew, I was asking if I could please drop art history and soon afterward, fibers. Still, I found myself barely able to stay afloat with only my design and writing classes to keep up with. There were many all-nighters for studies. And then, I had the all-nighters because I had to ride the public bus to the emergency room.
Things weren’t going great. To top everything off, what I had been told about Portland and its lack of sunshine was really and truly causing me distress. I had no family nearby. My peers tried as best as they could to care for me, but they were all swamped by their course work, too.
I remember going to a doctor (because I have to have a doctor in whatever state I’m living to fulfill my TPN orders) and he straight up asked me why I didn’t just eat ice cream all the time to gain weight. That was a good one, kind sir. I didn’t go back to that guy. The next doctor I went to was great, but ultimately no help.
I couldn’t keep doing the ER trips on public transportation along with everything else I had to do to survive on my own any longer. I ended up packing my things and leaving about a month before the end of my first year there. My sweet friends gave me a “going away” party at the restaurant that had my favorite teriyaki chicken and I’ll never forget our times together.
My Aunt Judy picked me up in Portland and we began the long trek (for me) home to Texas. We had her puppy, Pebbles, along for the ride. We made some really fun stops along the way and saw a lot of the country that I had never seen before! It was a difficult trip for me because traveling has been one thing that has always been really hard. We had to make a couple of multi-day stops at hotels so I could regroup before we continued on. Despite that, I’ll always cherish the memories from that car trip with her!
If we’re being honest here, looking back on leaving college makes me embarrassed and ashamed. I had everything I wanted in an education right at my fingertips but my body blocked me from being able to reach my goals. Every other part of it had lined up. The perfect school with financing and I was still unable to complete this challenge that I had every intention of completing.
Anyhow, that’s what it was. I was home in McKinney and decided I wanted to be a live-in nanny. Talk about nonstop work and not being able to take care of yourself! One of the worst decisions ever, ha! I took a job working for a single mom of two. She traveled about a week out of every month, which put me in the position of being a single mom of two during that time. It was absolutely not healthy for me.
Just a couple weeks into the job, I painted my bedroom at their house. I started having those chills and fever that I knew from the year before. Guess who decided to deny they could ever get another port infection? I was so reluctant to accept that it could be another infection that I blamed the paint on the bottom of my feet for some sort of paint poisoning. Insane, I know because it was obviously a port infection!
This infection was even more aggressive than the previous two. When I got to the ER, they started IV antibiotics and about three minutes into the infusion of the medication, my body completely freaked out. My blood pressure dropped and my pulse raced. The alarms sounded and about thirteen-hundred people piled into that tiny ER cubicle. They rushed me into another room and put this terrible blanket with holes in it that blows cold air on you. I don’t remember everything that happened but I ended up spending the night in the ICU for the first time. It was absolutely terrifying. And guess what that meant? Another port for this girl!
This visit was to Children’s Medical Center in Dallas but I was aging out of pediatric medicine and had to switch to adult medicine. This transition was reasonably smooth because I wound up with a spectacular doctor at Presbyterian Hospital in Dallas. She was always honest that she didn’t know exactly what to do with my case but she was extremely personable and kind.
After the live-in nanny job became too unhealthy, I moved into a super cute apartment (oddly, it had no windows) in downtown McKinney. Then, I tried my shot at an insurance gig. It didn’t go very well either. Not only am I terrible at selling something I don’t feel fully confident in (trying to make everything perfect in case someone’s life gets turned upside down? Talk about scary!) But the hours and stress left me literally with only this job in my life. I worked all day Monday through Friday and was unable to do a single thing outside of it. On some days, I also found myself in so much pain that I would have to go lie on the floor in the conference room. It was so embarrassing and so unhealthy.
To make sure we are on the same track, I want to refresh you that I was on TPN three days a week. I also had additional fluids to run through the week as needed because those four day stretches of no TPN were really taxing and left me severely dehydrated at times. Due to my many years of TPN use, my liver function numbers were severely elevated. This is a side-effect of TPN use and they aren’t quite sure why it happens.
As we arrive at the end of this chapter in August of 2012, I’m nineteen years old – almost twenty. My doctor asks me how I feel about getting off of TPN and seeing how I do. I’m maintaining my weight, my labs are pretty stable and she wanted to see how I did and see if it would help my liver to get off of it. She wanted me to eat whatever I could tolerate that was as high in calories as possible. She prescribed a low fat, low fiber, high calorie diet for me.
My response was? ABSO-FREAKIN-LUTELY! I would love to stop all of this and have a normal young adult life!
And that’s where I’ll leave you. Until tomorrow!