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     I remember the feeling of dying. At just 17 years old I experienced the feeling of my body slowly dying. You may ask “How does someone just 17 years old experience dying?” I never expected to ever experience the feeling of dying nonetheless at just 17 years old. The reason I experienced this was from malnutrition. I have severe gastroparesis which simply translates to paralyzed stomach, due to this condition I have lost the ability to sustain myself off of oral intake. I am able to eat and drink some but only really enough to just enjoy some flavors. I no longer can survive off of what I am able to eat orally, I am almost completely sustained by my feeding tube. I unfortunately was left for a long time without this life saving device, I don’t know why doctors do not place feeding tubes once they are needed. Doctors usually wait much longer than they should before placing a feeding tube. I have been told that they do not place feeding tubes until the patient has lost over 20 pounds. At the point that someone has lost 20 pounds due to a medical condition it most likely means they are very malnourished and may be developing irreversible damage. Personally I was left for 8 months without proper nutrition while trying other treatment options that were not working. By the time I finally got my feeding tube I was feeling my body shut down. It is a very surreal feeling and impossible to explain to someone who has not experienced it. From the outside I did not look like I was dying because I was still considered a “healthy weight” for my height. Internally I was not healthy in any way. I started to sleep 18+ hours a day because my body was just so exhausted from simply trying to keep my body running. I also started to become jaundiced, which is a sign of organ damage, I lost over 25 pounds, I became so weak I would almost pass out walking a few feet, my muscles started to atrophy from the little nutrition I had and the lack of movement. Later I found out during an endoscopy that my stomach was extremely atrophied as well because of how little it was working. No 17 year old should have to experience the feeling of their body shutting down and the pure fear and anxiety it causes. At one point I even told my mom “I don’t want to kill myself but I don’t really care if I wake up tomorrow.” I was in such a horrible mind set because I wasn’t getting help. I genuinely was scared for my life in the last month before my first feeding tube was placed. This fear later just turned into fear of complications, the feeding tube placement itself and other health issues that started to arise. 

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     I remember the relief I felt when my GI doctor told me he wanted to place a feeding tube. This relief was short lived and turned into fear, fear of the unknown. I was still relieved to finally get help and proper nutrition after months, but I was terrified of what that nutrition entailed. I had never really heard much about feeding tubes until I got sick. I quickly learned all the different types of feeding tubes and what all goes into living with a feeding tube. 

 

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     On December 16, 2021, I had my first Nasojejunal (NJ) feeding tube placed. I was brought into a radiology room which I later became all too familiar with. As I entered this room, I was a nervous wreck, I just clung to the stuffed animal I had brought to comfort myself. My mom was with me and tried to help calm me down. Before my first nasal tube placement I would cry over getting a nasal swab to test for the flu so the idea of a 4-foot tube being shoved down my nose and into my intestines was daunting. They told me what the procedure would entail and walked me through what they would do. I layed down on the radiology table and my radiologist Mike came to the side of the table and asked if I had any questions. I had so many questions running through my head but none that he could answer. I told them I was ready and they put the NJ tube on the sterile table and told me they would numb my nose and throat. They pushed about 20 ml of lidocaine gel into my nose and then told me to let it drip down my throat so I would be numb. I can still remember the bitter taste of the lidocaine slowly dripping down my throat. They asked me if I was starting to get numb and I was so they then asked if I was ready for them to start the tube placement. I just nodded and closed my eyes so they could begin. They started by putting the tube up my nose and once it started to turn down to go into my esophagus they told me to repeatedly swallow to help the tube get into my stomach. Once that part was over it went much smoother. After it was into my stomach, they had to get it through my pyloric sphincter which was difficult, but they got it in and started to push the tube down into my jejunum which is the second part of the small intestine. Once the tube was in place and they could see it on the x ray they removed the guide wire which made the tube much less uncomfortable. They then taped the tube onto my cheek to keep it in place and then placed the extra tubing over my ear. I then was taken up to my hospital room where I would spend the next 4 days. 

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     The next 4 days consisted of starting feeds very slowly while monitoring my blood values. When you start to get nutrition after not having it for so long you can get something called refeeding syndrome which can be deadly if not treated. This is the reason they kept me in the hospital while I started tube feeds. I would get my blood drawn at 4 am every day to check my blood values. It is not relaxing staying overnight in the hospital and is almost impossible to get good sleep. The days in the hospital consisted of doctors coming in to check on me and my nurses coming in every hour to check my vitals and see how I was doing. On day 2 in the hospital someone dressed up as Santa came in because it was only about 10 days away from Christmas. He asked me if I was going to be home for Christmas this year, which really shocked me because I never thought about having to be there for christmas. Luckily I was able to go home 6 days before Christmas. On day 3 of being in the hospital I had a representative come in to teach me how to set up feeds myself so I would be able to do it when I went home. I was set up with a home health delivery company who sends me the supplies I need. I was sent home with a feeding tube pump, iv pole, formula and a backpack to hold the feeds so I could be mobile. I had to learn how to set up my feeds in order to nourish myself and it had to become a part of my everyday life. At that point it felt so scary, new and overwhelming but now over a year later it is just as natural as eating is for a healthy person. When I finally was able to go home on day 4 It felt so strange. I had a tube on my face and was “eating” through my small intestine. I knew at that point my life would never be the same as before. 

 

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     During my 4-day hospital stay after my tube placement so much happened, but time also moved so slow. One of the most impactful moments for me was when the on-call GI doctor came in for the first time. This GI doctor is now one of my favorite doctors I have ever had and is one of the kindest people I’ve ever met. What he said to me genuinely changed my view on myself and how I carry myself through my issues. 

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     He walked into the room with a big smile showing from underneath his mask. I instantly knew he would be a kind and genuine person. He looked at me laying in my hospital bed just a day after getting my NJ placed and I was smiling. He told me “You might make me cry, usually when I come into the hospital room of these gastroparesis patients, they are just miserable, so angry and sad. But you are just sitting there smiling.” I just laughed at him and told him that I have always smiled through all of my problems no matter how miserable I am. I also explained how I am genuinely just feeling more alive after having started feeds. He then said, “I’ve never seen a patient smile after getting an NJ tube placed.” In that moment I realized that the way I go about my illness and handle my problems is quite different from other people. I hadn’t realized how much optimism I had in life compared to the average person.

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      Generally, people aren’t as optimistic as I am during situations like this. I’ve always been told I was optimistic, positive, happy and overall, just strong when it came to my situation. I never saw it that way, I just saw it as living my life despite my situation. I am not able to control what happens to me or what my health is like, but I can control how I react to it. I obviously allow myself the room to be upset and angry at my situation, but I don’t let myself dwell on it which I think is what keeps me as happy and optimistic as I am. 

 

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     The day I had my surgical feeding tube placed is mentally ingrained in my head. I will never forget waking up and looking down at my forever changed stomach. I realized that my body will never look the same as it did before I got sick, I will always have scars to remind me of what I have been through. Not all of my scars are physical, when you go through such a dramatic shift in your life it leaves mental scars as well. 

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     Looking down at my new surgical feeding tube which I lovingly named Gordan Junior, I realized that my life has gotten to the point where I need more permanent medical devices. As cliche and vain as it sounds, being a teenage girl with a plastic tube sticking out of my abdomen is not an easy thing to deal with mentally. Going out in public wearing clothes that show my feeding tube or even just having the visible tubing sticking out of my backpack can be embarrassing. Sometimes I just wish I could be normal and not have to look down and see plastic sticking out of me. I wish I could just put on a crop top and not have to worry about the number of stares I will get from random people or even people coming up to me to ask about it. I am very open to questions and enjoy answering them in order to educate people and raise awareness. But sometimes I want to just walk around with a crop top on and not get stopped with questions. 

 

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     The day I found out I had lost all vein access and needed a central line placed was genuinely one of the worst days of my life. I sobbed for hours and was so insanely anxious that I didn’t know how to really function through that anxiety. I didn’t have a choice to get a line or not because I need hydration to function and I couldn’t get enough just going to the infusion center twice a week. I also was unable to get peripheral iv access easily. In the case of an emergency without a central line, they would need to place an IO line which is basically where they have to drill into your bone to get access to give you anything IV. Without my line I cannot function, I become severely dehydrated and have no energy. Having access to a permanent iv access has been so helpful for my quality of life but was so insanely scary. 

The day I had my first picc line placed was so surreal. I was terrified to have to live with a tube in my heart that could easily kill me. I luckily was able to get my line placed under sedation during a routine tube change. I would have been way more nervous if I had to be awake for the placement. 

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     August 12th of 2022, I had my first central line placed. I have now had a central line in my heart for 5 months. During these five months my life has improved in many ways due to finally having stable hydration. I have also had 2 infection scares and a blood clot scare. Central lines can cause many issues including sepsis which is a leading cause of death in the United States. 

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     The day I went in for my line placement I specifically brought my dinosaur stuffed animal and wore my shark slides to comfort myself. I walked into the hospital which is a very common place for me to be since getting sick. I walked into the hospital and checked in with the receptionist who knows me all too well at this point. She gave me my wrist band and my papers so I could go check in with the preop team. I walked back to my room and got into the oversized, slouchy hospital gown. Once I got into the bed, they have me a heated blanket and had to try multiple times to get an IV in so they could sedate me for the procedure. Once I got the IV in, I was brought back into the freezing cold Interventional radiology room. I met my team who was doing the procedures on me, and they checked with me about what was going to be done. I laid down onto the bed, and they told me the position to lay in for the procedure. I had to have my arms out to the side so they could use an ultrasound to check for a good vein to put the picc line into. Once I was in a good position and they found the spot for the picc line they put me under. After that point I don’t remember anything until I woke up almost 2 hours later. 

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     Once I woke up, I looked at my arm to see what it looked like and start to try to get used to this new thing in my body. I never should have had gotten to the point in my health where I needed a central line but because I was left without proper nutrition and hydration for so long, I was no longer able to get the hydration I needed through just my feeding tube. If I would have gotten a feeding tube placed earlier before my gastroparesis progressed to the point it got, I might have been able to tolerate the hydration I need through my feeding tube. I know have to work very hard and push myself to try to tolerate a higher quantity of fluid through my small intestine in order to try to get myself to a point where it is safe to remove my line. I have to endure pain, discomfort and bloating due to pushing my body so hard to be able to handle this. The longer you go without nutrition the harder it is to tolerate it. I am one of the lucky patients who got help in the first year of being sick, but I still got to a detrimental situation before I got help.