If you wanted to look up the word sick in the dictionary, you would probably find a picture of me. Ever since I was eight years old and started struggling with muscle fatigue and appetite loss I have been on a downward trend in my health. By the time I was ten I had had my first NG tube. This was followed by my first surgery when the NG tube caused a bowel obstruction. Then I had to deal with an even thicker NG tube to suction. This was followed by my first NJ tube.
I spent a good chunk of fifth grade in the hospital, and went home from the hospital with the NJ tube still in place and a diagnosis of severe gastroparesis. The rest of my childhood was spent racking up frequent flier miles at my local children’s hospital. At age thirteen my heart rhythm disturbances took the front seat as the most pressing medical problem.
One day a little bit after I had started a new medication for my speeding pulse, my heart went into a really rapid rhythm called SVT. I had been home with just my dad who insisted I was just looking for attention until I lost consciousness in front of him, and he realized something was very wrong. Blaming in on my non-existent eating disorder (he refused to acknowledge the fact that I had gastroparesis and other physical health problems even though half the time I had an NJ tube through my nose into my small intestine) he called an ambulance and got me to the hospital where they treated me with a medication called adenosine that literally stops your heart and then restarts it, hopefully in a better rhythm.
Over the course of the next few years, my heart went into SVT at least two if not three more times. This meant I would repeatedly feel my heart body-slamming my insides, get short of breath, be on the verge of blacking out, and get rushed to the hospital to get adenosine slammed through my veins.
I would get the pacer pads hooked up to my chest, have everyone stare at the wavy, spiky lines of my heart monitor with bated breath, while I had all the air and life sucked out of my core, and finally with a collective sigh, my heart monitor would begin reading a normal rhythm.
I also continued to have runs of that rhythm a-fib over the course of the next few years as well. Dr. Oster (my cardiologist) explained to me that this rhythm only seemed to occur when I was low on potassium or magnesium. So, they would just treat the underlying cause which meant correcting my electrolyte imbalances.
This turned out to be quite annoying because I didn’t respond to oral or NJ replacement of my electrolytes because by my mid to late teenage years not only was it obvious that my gastroparesis would never go away, but it was also proving to be the type that gets worse over time. I had developed malabsorption so my NJ tube feeding gave me really bad diarrhea and I couldn’t absorb certain nutrients through my digestive tract anymore. Because of this, I was also constantly low on protein, albumin, prealbumin, iron, calcium, and phosphate.
Their only solution to this was to frequently have me either go to the ER to get IV infusions or if I was really low; get directly admitted to the adolescent medicine floor (my home away from home) to get those IV infusions over the course of several days.
Dr. Oster warned me that if my a-fib became even a tiny bit more frequent, or if it for some reason didn’t go away one time after they replaced my electrolytes then they were going to have to add more medication to treat it, including anti-coagulants to prevent me from having a stroke or a blood clot in my lungs.
In the meantime, I felt like I had packed up and moved into the hospital and doctor’s offices, especially Dr. Oster’s office who said that he would be able to watch over my cardiac care until I turned 22, and then I would have to find an adult cardiologist. It was reassuring that he could follow me that long.
Mental health-wise, homeschooling had been a good solution to my anxiety after enduring a year-and-some-change of bullying at the private Jewish day school I had attended in sixth grade and the first two months of seventh grade.
During sixth grade, the bullying had pushed me over the edge and woken up PTSD symptoms in me from the five years of physical and sexual abuse that I had endured from ages 5 to 10 at the hands of my best friend’s father. He had repeatedly raped me at gunpoint multiple times a week. At least he had realized, that because of my small size he would have killed me if he had forced himself all the way in and stopped himself each time before penetrating all the way.
My PTSD was also from the emotional and verbal abuse I had suffered on both psychiatric units and medical units throughout the years. I would later learn that abuse and gaslighting by medical professionals towards patients with rare or invisible diseases, is so common it even has a name, “Medical PTSD”.
Homeschooling had seemed to avert an impending crisis. I was finally feeling like I could handle my life again. Then as I entered adolescence I started losing weight again…and fast.
By the time I was seventeen I had fallen off the growth charts for weight and was in the 5th percentile for height. Due to my gastroparesis, anything that went in it didn’t get digested for days if it got digested at all. I’d tried all the meds, all different types of diets, and had an NJ tube on and off, and nothing helped.
About a year after I started homeschooling, I was back down to drinking only one Pediasure and one cup of grape Pedialyte a day. All the weight I had worked so hard to put on had melted off like ice on a hot summer day.
Dr. Sampson spoke to my pediatrician, Dr, Kaye, who was specifically an adolescent medicine specialist.
At thirteen I had officially entered that glitzy, make-up-wearing, parent-offending stage of adolescence and got to meet with my doctor on my own before my mom came in to join the appointment as well.
Dr. Kaye sat me down to talk.
“I know you’re working really hard to eat and drink on your own, but I think we need to give you a little extra help until we can figure out the right treatments to give you for your gastroparesis. Your potassium, phosphate, magnesium, albumin, and prealbumin are all really low, which indicates severe malnutrition.” she began.
I just nodded unsure of where she was going with this but starting to get nervous, as she scanned through my labs on her computer showing me how far off my numbers were from normal.
“You have ketones and protein in your urine, and I know you’re complaining to me about being tired, cold, dizzy, and having headaches.”
I nodded, the headaches had been excruciating.
Plus that weird fuzzy stuff growing on your stomach that you showed me that freaked you out is called lanugo and is also from malnutrition and being underweight. I spoke with Dr. Sampson and she agrees with me. We can fix all that if we put another NJ tube in and put you back in the hospital for a couple of weeks to monitor you for that refeeding syndrome we always worry about. After that Dr. Sampson and I would like to keep that NJ tube in a little longer to get you on a better regimen and treatment plan. I think we need to start looking into things like a surgically inserted feeding tubes through the abdomen as well. All of this ‘putting-in-of-one-NJ tube-then-taking-it out, then-putting-it-back-in,’ business, isn’t good for you.
I agreed to the plan. I felt so sick. We had to do something and I knew it. As much as I hated hospitals and feeding tubes, there was no way around it. Dr. Kaye assured me again that I’d get put to sleep for the insertion of the NJ tube and then we called my mom in.
“Can’t she just go to an eating disorder unit instead of getting another feeding tube at home?” my mom kept asking. “We really can’t have her at home unless she’s eating on her own. My husband can’t stand looking at the feeding tube. It makes him feel like a failure as a parent.”
It took until this year, when my condition became terminal, for my dad to acknowledge the fact that I have severe chronic physical illnesses. My mom also thought part of my illness is in my head for the longest time as well, until she started talking to my doctors at the hospital the last few years and seeing my charts and realized I have a severe, degenerative, now terminal condition.
“She could really use more nutrition right now than she can take in by mouth. At this point with her gastroparesis, she physically just can’t eat on her own without getting sick and vomiting.” Dr. Kaye explained to my mom. “It’s not that she doesn’t want to eat, it’s that she can’t.”
It was like no matter how many times this was explained to my parents they couldn’t comprehend it.
“Well what if she just took little small sips and grazed throughout the day?” my mom asked.
“Well, that’s the gastroparesis diet. Isn’t that what she’s been doing?” Dr. Kaye asked my mom.
“Well…yeah…but what about going to an inpatient eating disorder facility?” my mom asked.
“That won’t address the situation at hand, because she doesn’t have an eating disorder,” Dr. Kaye answered. “She can’t eat by mouth or feed into her stomach. She needs an NJ to bypass her stomach. No matter what therapy groups and counseling techniques you throw at her anxiety or whatever else you might want to address, the issue at hand is that her stomach is emptying so slowly that it is not allowing her to digest food and drinks. The traditional meds used to treat that too slow emptying aren’t working, and, as I’ve explained before, she’s not a candidate for a gastric pacemaker because she also has delayed intestinal motility, so we have to find alternate ways to get nutrition into her.
It took a little more convincing and acquiescing on the part of Dr. Kaye, but finally, I was on my way to my room at the hospital with plans for NJ placement that evening and home nursing later on after I was stabilized for a couple of weeks at the hospital and sent home with the feeding tube in place again.
The next five years of my life were a flurry of going in and out of hospitals. They basically could have set me up a personal room on the adolescent medical floor and Pediatric ICU of my local hospital.
Because I was such a frequent flier patient, I had the same few nurses assigned to me every time I went in. It was usually Carol or Cindy for days and Cheryl or Jenny for nights. I always had the same few aides as well. When I was in the PICU (pediatric intensive care unit), however, I got a whole bunch of different nurses. Most of them were super nice, but there were always a couple who were a little rough and scrappy around the edges.
From when I was thirteen until I was nineteen, I must have had about twenty or thirty different NJ tubes as well. They had a tendency to either get clogged, slide, or get pulled out. Or we would briefly think I didn’t need it anymore and then I would have a gastroparesis flare and they would put a new one in.
I never went back to school during that period of time, I was homeschooled the whole way through high school. I did however in the four-year span between ages thirteen to seventeen go back to the partial hospital for anxiety and depression several times. Everything would just get to be too much with the stress of dealing with the illness itself and the way my parents were constantly insisting that all my medical problems were in my head, and it would trigger severe breakdowns.
The worst part was my dad who, when I had the NJ in my nose, refused to even look me in the eye or even look at my face or head at all. He kept telling me that I needed to try harder in therapy and that I must not be trying hard enough because more times than not, I wasn’t eating much on my own.
The only thing I had was my writing. I wrote furiously about every aspect of my life, as well as writing fiction and poetry, which every good writer knows is also about every aspect of the writer’s life.
My writing was keeping me afloat emotionally despite the fact that my dad and I had such a strained relationship that as I got older and sicker was only getting more taxed. My dad kept telling me I needed to pull up my bootstraps and just eat and function normally and that I must not be doing something right because I was obviously slipping.
It wasn’t only apparent to my dad that I was getting worse. It was apparent to everyone that I was getting worse. Most of all, me.