I started May in the hospital for pain control. My MALS pain was unresponsive to any medication that I had at home, and I could eat less than ever before. My weight began to drop again, and my hydration status was rapidly declining. I was completely reliant on the saline infusions twice a week to keep my body moving.
In addition to having no plan for hydration or nutrition, there was no known explanation for my return of pain. My ultrasound and Upper GI series looked normal, meaning that the surgery had fixed the vascular compressions, yet my symptoms remained. We had no idea what to test for.
I spent my 18th birthday feeling as sick as I had ever been. In addition to having my MALS pain back, I was becoming extremely weak. I struggled to walk up the stairs or shower without nearly collapsing. I was constantly pale and dropping weight with every passing day.
When I went to my GI appointment mid-month, I knew I wouldn’t hear anything good. I was in terrible shape. I was officially underweight, and the saline infusions couldn’t keep my hydration status at a good place. It was still devastating to hear my doctor’s suggestion for the next step: Total Parenteral Nutrition (TPN). TPN is a form of nutrition that is delivered straight to the veins, bypassing the entire digestive system. It is administered through a long term IV called a PICC line. This kind of line is placed in the upper arm and delivers nutrients straight into the heart. I was upset to hear that this was likely my next step and begged my doctor to push it off until after my graduation, as I would need to be in the hospital for at least a week to get my body used to TPN. TPN also comes with a lot of potential risks such as liver and kidney damage. The PICC line also comes with its fair share of risks, including infections and blood clots. Additionally, PICC lines can’t get wet, making swimming and even showering tricky. He agreed to push it off for a few weeks, in hopes that my symptoms would decrease, and I could avoid it all together.
Unfortunately, my symptoms didn’t get any better, and my health was getting worse. I was too weak to walk, and barely made it through my graduation ceremony without collapsing. My condition was getting to a point where it was scary. But I still didn’t want to make the choice to start TPN. I didn’t want to lose all control over my life. But my body finally made the decision for me. During my weekly bloodwork at one of my saline infusions, my body was starting to show signs of acute kidney injury (AKI). My kidneys were beginning to suffer from dehydration. And other lab work showed signs of malnutrition. As sad as it was to say, it was time to intervene with TPN to prevent irreversible damage to my body.
Kate's Courage 