How I Felt When I Was Put on a Central Line for My Gastroparesis

Here I am, lying in a hospital bed in a small room with the smell of stale chicken and vegetable broth circulating through the air. I hear the sounds of rolling computer carts, other patients yelling in pain, and nurses and doctors talking amongst themselves about each patient’s care. I feel like I am trapped with no other options, and all I want to do is go outside and smell the fresh air. 

The gastrointestinal (GI) team visits my room every day telling me that as of right now, it would be best for me to move forward with total parenteral nutrition (TPN). They say that my body is losing muscle mass, and I cannot move forward with the gastrojejunal (GJ) placement until I have a good source of nutrition.

Today is the day I’m admitting to the fact that I’ve exhausted all other options and I am left with one more to keep myself alive. The GI team walks into my room and starts discussing how my nasojejunal (NJ) tube didn’t work. I want to get the conversation over and done with before the dam holding back my tears opens back up. 

Up until this point, I have refused TPN due to the high risks of infections in people with central lines. Central lines, though, have less risk of infection in TPN, but since I’ve already had sepsis, I am even more prone to developing sepsis again. I jump into the conversation before the doctor continues, and I reply that I know I have tried everything at this point. I say I’ve tried so hard to avoid TPN, but at this point, it’s best that I move forward with it. 

The relief that came over my doctor’s face as I agreed to TPN is a look I will never forget. Just yesterday, she became emotional as I refused TPN yet again, and she told me I’m “just letting myself waste away.” I heard the lump in the back of her throat and saw the sadness come across her face for a moment while she collected herself, put on her “professional face,” and continued on with the conversation. 

The two GI doctors then walked out my room to place orders for a powerline tunnel placement. I would begin TPN later that same day. As I told my doctors to move forward with TPN, I felt absolute defeat because I have come to this point. No matter how hard I’ve tried to avoid TPN, I now have to use it. Life is ironic — I was terrified of moving forward with a feeding tube, but now I’m on TPN, which feels even harder.

In the weeks after I agreed to TPN, I hooked myself up to 24 hours of continuous TPN every night. I fought the defective tubing every night to make sure there were no streaks of air within the line. I washed my hands and disinfected my cart surface to ensure there was no chance any type of bacteria could possibly transfer to my central line. I pulled out the 3000-milliliter bag of TPN and the vitamins from the fridge so they could sit out for an hour before I hooked myself up. I gathered all the necessary supplies: alcohol wipes, syringes, needles, saline, batteries, and new tubing. I wiped down every access point to my central line with an alcohol swab for well over 20 seconds to protect myself from any chance of getting sepsis. Every night, when I successfully hooked myself up and was finally able to lie down in bed, it was a relief.

My gastroparesis was ever-present with one exception: the pain. My pain seemed to have dissipated during those weeks on TPN since I was completely bypassing my entire digestive tract. It was a great relief to not have any pain in my abdomen for once. I eagerly waited for my G-tube to be switched to a GJ tube in the coming weeks. 

To my surprise, my motility specialist put in an urgent referral for my GJ tube placement. My amazing surgeon was able to fit me in to place my feeding tube as soon as possible. Within three weeks of trying different formulas, I was finally tolerating a peptide through my GJ tube. I was ultimately able to wean off of TPN and have my central line removed from my chest. 

The interventional radiologist had me breathe in, and when I breathed out, he pulled out my central line. I became overwhelmingly joyful as the line effortlessly left my jugular vein. I lay flat for an hour after having my line removed, elated that I no longer had to worry about a blood infection from my powerline tunnel. 

TPN is never off the table because of my gastroparesis, and I know it’s more likely than not that I will end up on TPN again, but as of right now I am incredibly grateful for my GJ tube. Even though I had spent years avoiding a feeding tube, I am so happy to have one. I do not see my life moving forward without my feeding tube, as it has already brought me great relief to receive proper nutrition no longer administered through a central line.