About the Author: Abby is a chronic illness warrior who has been living with Gastroparesis and Mitochondrial Disease. She works full time as an administrative assistant. When she’s not working, she enjoys watching Netflix and planning future vacations. She also loves spending time with her husband, parents, and 5-year-old dog Gemma!
My Diagnosis Journey
For many, turning twenty-one highlights the rite of passage into the bar and nightclub scene. Most twenty-somethings spend their nights and weekends meeting up for drinks, grabbing a bite to eat, and socializing into the wee hours of the night. For me, it meant comfy pajamas and nights on the couch.
I’ve had stomach issues ever since high school. I remember finishing dinner every night with a stomach ache and taking multiple antacids before bed. Fast forward to the year I turned twenty, I was diagnosed with Gastroparesis, also known as paralysis of the stomach which basically means I can’t properly digest food. Having your stomach suddenly stop working just isn’t normal, so I spent the next three years sifting through doctors trying to find out why. My dietician, who specializes in Metabolic Disorders recommended a physician who is trained in the same. After a battery of tests, including a muscle biopsy, I was diagnosed with Mitochondrial Disease. As my doctor explained it to me, it’s like trying to run your whole house on a single battery. When you have Mitochondrial Disease, your body fails to create energy properly, which can then cause your automatic body functions to slow down, or in worse cases, stop working all together. I was relieved that I had an answer to why I had Gastroparesis, but now I had a more complicated diagnosis to deal with.
One of the first items my doctor prescribed was daily IV fluids. The constant prodding of intravenous needles left the veins in my arms scarred and inaccessible. As a result, I was given a Mediport, a small medical device that was surgically placed in my chest to give doctors access to my veins. Imagine, while all your friends are out having fun on the weekend, you’re home learning how to properly flush a line and hook up an IV bag. Girls I know are accumulating designer handbags and shoes; I’m accumulating medical supplies.
Always Staying Prepared
There’s no spontaneity in the life of a twenty-four-year-old with a port. Every event I attend, every hour of the day must be planned in advance. Where will I be when my IV stops? Do I have enough supplies with me? What if something goes wrong and I’m not home?
For the first two weeks, I was attached to an IV pole for four hours at a time, which meant I could only start my IV’s after I had gotten home from work. I was given the option to use a portable Curlin Pump, which allowed me to take my infusions on the go. That was good and bad! One evening I was driving home from work, and I unexpectedly got stuck in traffic. I was continuing my drive home and my infusion had ended, but I was still on the highway, about fifteen minutes from home. I was so new at planning my IV times, that I never accounted for extra drive time. When you have a chest port, you have to immediately flush the line with saline and heparin after the infusion ends to prevent any infection and to keep the blood from clotting. I thankfully made it home with no issues, but I have made sure to never make that mistake again.
Normally, I need two saline flushes, one heparin flush, and six alcohol wipes for one four-hour infusion. I always carry extra in fear that I may need more. A few months ago, I accidentally unhooked the cap on the end of my line after my IV was over. I didn’t realize I had done it, until I went to flush my line as usual, and my blue cap was gone, and there was blood pouring out my line. I called my nurse panicking and she walked me through how to fix it. I had to use extra saline and heparin to remove all of the blood, but I happened to be at home. If I was out of the house and didn’t have extra supplies with me, I’m not sure what I would have done.
Accepting The Good and Bad
If there’s a pool party on Saturday, I’m already planning my IV schedule on Monday. There is a lot of planning that goes into de-accessing my port. I have to plan what days my nurse can come to remove the needle and then re-access it again. I also have to think about how long I can go without my IV fluids. If my nurse removes my needle on Thursday, but can’t replace it until Monday, that’s three days that I have to go without my fluids. I enjoy the days that my needle is de-accessed, it allows me to go swimming and take showers without a cover, but I’m still always planning. Especially in the summer, my IV fluids help to give me energy, so while I enjoy those days without having to worry about my needle getting wet, I still worry about how sick I might get from over using my energy. Impromptu isn’t in my wheelhouse.
I feel indifferent sometimes when it comes to my chest port. It has made me have to plan parts of my life, that most people will never have to worry about. However, having a chest port introduced me to my nurse, who I’m so, so grateful for. I look forward to seeing her each week when she comes to change out my needle and bandage. She’s family now. Incredibly, I’m thankful for this port. It has allowed me to still work a full-time job, run a household and on a good week, meet up with a friend. I have different priorities than most of my peers, but I’ve learned that's okay. I’m still living my best life.
How has living with a chest port impacted your life? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members!