I’ve always had problems growing up. When I was born, I was 6.5 lbs. When I was 4 years old, I was still the size of an 18 month to 2 year old. My pediatrician and mom tried everything they could to get me to eat and gain weight but I would not have it. At one point, my ped. told my mom to dip apple slices in caramel and have me eat those all day and that would help me gain weight but I was still not a huge fan. I was diagnosed with failure to thrive and passed off as a picky eater. At 3 months, I contracted RSV and from there on out I would cycle between pneumonia, bronchitis, and RSV attacking my lungs and almost landing me in the hospital every year. This didn’t go away until I was about 10 years old. When I was younger I did the sweat test for cystic fibrosis because of these problems which came back positive so I was transferred to Primary Children’s where they repeated the test, but they couldn’t get enough sweat to go off of and so they did genetics testing which ended up coming back negative. I also ended up needing ear tubes and had multiple ear infections and surgeries to replace the tubes because my ears would bleed. I absolutely hated this surgery because I was terrified of the doctors. Plus, when I woke up, my head hurt so bad and I was so nauseous.

Up until June of 2014, we dismissed all of these medical issues to just normal childhood illness. But then one day in the middle of the summer of 2014, I woke up to excruciating stomach pain. I was so scared and in pain that I called my mom in a panic. I had just started my period and so my mom called her sister up, my aunt, for advice on how to get rid of menstrual cramps. The advice was to take a really hot bath or use a heating pad and take ibuprofen to help with inflammation. These tricks worked and we all had no doubts in our minds that I was just going to have to be dealing with menstrual cramps during my cycle from there on out. The problem is, that was my last cycle I’ve had in 20 months. When my cycle disappeared we waited a few months to see if it would come back. That same summer I also ended up getting a brutal stomach virus that lasted for 2-3 days where I couldn’t hold a single thing down — not food, diet coke, sprite, not even water — I was absolutely miserable. When school started, my problems became even more apparent. I ended up having to be pulled out of class because I was wailing in pain, unable to function. I was only able to curl up in a ball and cry until it went away. I would try the heating pad tricks, even to the point where I was burning myself in an attempt to distract myself from the pain, but nothing worked. These attacks would be spread out and few in number at first, but they soon became more and more frequent and I would be having 2-3 a week. They would wake me up at night and keep me awake. I would be in so much pain that I would vomit anything I had eaten earlier that day.

Finally, one day when one of my attacks hit me, we rushed to the doctor. After hearing that my cycles had disappeared, he thought I could have endometriosis. He ordered an ultrasound and set me up with an OB/GYN. In the meantime, I ended up landing in the ER one weekend when my pain became too much to bear. The ER suspected appendicitis from my ultrasound done there and ordered a CT scan to be done. Their only finding was that I was constipated. At my OB/GYN appointment, the lady came in, looked over my chart, took one look at me and said, “Your problem is constipation. Eat more fiber and take in more fluids. Then come back to me in a couple of weeks.” Actually, the first thing she said to me was, “So Rachel, at 15 do you want to tell me what you’re doing at an OB/GYN?” And I was like, “Gee, I was hoping you could tell me that.” But she clearly ended up being no help. We went back to my doctor and he had planned to schedule exploratory surgery to see what they could find but in the middle of this, I ended up having an extreme attack in the middle of my History class and my mom rushed me to Primary Children’s ER. After extensive testing and looking over my chart, that ER doctor again concluded that I was constipated and sent me home with a clean out regimen and an appointment with one of their GIs.

After seeing the GI, he decided he needed to scope me and on January 9th, 2015 I was diagnosed with Eosinophilic Esophagitis and Eosinophilic Colitis. Fast forward and I was rapidly losing weight. My GI decided to place an NG tube for nourishment as I was only able to drink and hold down breakfast drinks. The first NG tube placement happened at my local hospital where the ER doctors had NO clue what they were doing. They ended up placing a tube meant for pumping my stomach, not feeding me, so this tube was huge! I couldn’t swallow my own saliva without intense pain and was spitting it into a cup to keep from needing to swallow. Needless to say that tube was pulled and I had to go back to Primary’s for the NG placement. The tube worked for a little bit but I soon started vomiting up formula in my sleep and all other feeds. I was rapidly dropping weight. We switched GIs and was told I was going to be admitted to the hospital and have an NJ placed. This tube soon failed as well and at 83 lbs, my doctors had limited choices. They soon placed a PICC line and started TPN.

One night, my temperature shot clear up to 104 degrees and with a central line, you always worry about a blood infection and ultimately, sepsis. So we rushed to Primary’s and by the time we got there, I couldn’t even stand up, I was so weak. They called a code red on me and I was rushed to a room where 6 or 7 nurses and doctors swarmed me and started to work on me. I soon was unable to move my left side and suffered from a horrendous migraine. In the morning, the doctors called it a hemiplegic migraine- a migraine that mimics a stroke. The only problem was that once the migraine goes away, patients usually get their movement back fairly quickly. Mine was improving very very slightly with time, but no where near as fast as it should have been. We attributed this to my massive weight loss and my muscles just being too weak to recuperate very fast and I started intense, at home physical therapy twice a week.

My PICC lines soon started to become problems as they would get blood clots around them and cause extreme pain. In June of 2015, we decided to place a port and do a gastric emptying study to finally see what was going on with my stomach. I ate one radioactive egg and laid under a scanner while it tracked the egg’s movement through my GI system. The egg sat in my stomach, doing nothing for the first 30-45 minutes of the test and only started moving when I started to cough/gag because of pain. After the test was over, 94% of the egg remained in my stomach. I was diagnosed with severe delayed gastric emptying, or severe Gastroparesis and within two days of the test, went under for my port placement. I was also tested for and diagnosed with POTS due to my increased heart rate and drop in blood pressure upon standing and my recurrent fainting episodes.

My summer of 2015 was a wonderful break from chaos and a great time to relax and heal. I slowly gained back my strength in my left side, but in September a staph infection decided to camp out inside my port, causing high fevers, fainting, chills, uncontrollable shakes, and much more. I was hospitalized and put on two different IV antibiotics to try and get rid of the infection. The doctors decided that once they could get the infection out of my port and because the infection hadn’t spread throughout my bloodstream yet, they would not have to remove my port. Fast forward a few weeks and my bladder out of the blue, fails. I am no longer able to void on my own due to complete bladder failure and have to self-cath 4 times a day. Fast forward a couple more weeks and I end up back in the ER the night before Halloween with a 105+ degree temperature, an increased heart rate, a lowered blood pressure, and difficulty breathing. They admitted me and started IV antibiotics again. After trying multiple doses of IV tylenol, cold packs, no blankets, and my temperature still not coming down, we decided we needed to remove my port. On my way into surgery, I remember hearing the surgeon commenting on my state and saying, “She’s definitely septic.” After surgery, the surgeon wanted me placed into ICU as my blood pressure had dropped in surgery but the anesthesiologist felt that I could return to my regular room. Halloween night, my blood pressure plummeted and I went into septic shock. I was rushed down to ICU where they placed a second IV and just dumped fluids into me in an attempt to raise my BP. If my BP did not rise before morning, they would be forced to place a line in my neck and use blood pressers. In this process, because my blood vessels were so dilated due to the infection, they became leaky and I retained 7 liters of fluid into my tissues. By morning, my BP had stabilized enough that I did not need the line and my doctors felt I could return to my regular room by evening.

However, I had developed a bad cough and had expressed that it was difficult for me to breathe and my chest felt heavy. The doctors however, were not too concerned. After 3 hours, my cough had gotten so bad that they needed to put me on 10 liters of oxygen and my stats were still not 100%. They decided to bring an x-ray machine into my room and get an x-ray of my chest which revealed that my lungs had fluid in them; I had pulmonary edema- the thing people get when they start coughing up blood because their lungs are deprived of oxygen. They sent me back down to ICU and placed me on a Bi-Pap machine that pretty much breathed for me, forcing oxygen into my lungs. It was doing 70% of the work for my body. They did an ultrasound on my side and discovered that I also had fluid in my chest cavity between my chest and my lungs. Luckily, in the morning things had started improving and I was able to go down to 30% on the Bi-Pap machine. The doctors gave me meds to make me pee in hopes that in the process, my lungs would drain of fluid so they wouldn’t have to put in a chest tube. Again, angels were watching over me and my lungs did improve more so that by the next morning I had been able to switch to a C-Pap machine, which still aided in my breaths but did not force oxygen into my lungs as forcefully as the Bi-Pap. On day 2 in the ICU on this go around (not including the night/day for my septic shock), I was able to move back up to my room on 3 liters of oxygen through a nasal cannula.

The next week ensued the difficult decision not to place another Central Line because of the infection risk and to try NJ tube feeds again. I was also able to slowly wean off of the nasal cannula to the point where I only needed 1 liter of oxygen during the day and 3 at night, then to only needing it at night, and then being able to come completely off of it. During my need for the nasal cannula, I got 3 twenty + minute bloody noses because of how dry the oxygen made my nostrils and I ended up needing 2 Iron infusions. On day 1 of tube feeding trials, I did not do well at all. I was at a level of 10 pain, screaming and crying and all the resident doctor could do was sit in my room and watch me because there was nothing he could do. It became necessary to place a PICC line for nutrition because I had already gone 8 days without any nutrition at all, only IV fluids. They were then forced to place me on the Neuro-trauma/Rehab Unit to try and help me get back to full functioning and to try and work me up on my feeds — and when I say they were forced, they actually forced me. They ended up having a care conference to decide what to do with me and I was told I was going to be in on it but then they never came and got me. They told my parents they were sending me to the Rehab Unit but then told them they weren’t allowed to tell me until the Rehab team had come and talked to me about moving me down there. I was terrified. Throughout this whole experience I have had nurses accuse me of faking it or being anorexic or bulimic. I have had doctors not believe me when I express my concerns and my situation not be taken seriously. I was worried that they were going to force me to eat and ignore my physical symptoms. I had a mental break down and cried for a good hour. Earlier that week, my doctor had promised me he was going to do his best to get me out of the hospital by the weekend because he knew how much time I had spent in there and now, it felt like he had stabbed me in the back.

Throughout the entirety of my 3 week stay on the Rehab unit, I felt mistreated and misunderstood. I had Physical Therapy and Occupational Therapy once every day and Feeding Therapy 3 times everyday. I would throw up in front of my Physical Therapist and she wouldn’t report it to my nurses and when asked about it, she would deny it. My Feeding Therapist would sit there and talk about food the entire time she was in my room: the texture of food, the smells, memories of food during her childhood, food food food. I have to say, I was traumatized. Of course I wanted to eat!! Who the hell wouldn’t? But every time I tried, I would vomit and have extreme pain that my nurses would just dismiss and not treat. However, I was afraid if I didn’t keep trying to eat, they wouldn’t think I was trying hard enough and wouldn’t let me go home. So for 3 weeks, 3 times a day, I would force feed myself, just to throw it all back up, but I did it because I didn’t want to let anyone down and I really just wanted to make it home.

The majority of my nurses were very sweet and I appreciated them very much. They helped me and my family through many difficult times and played games with me when my family wasn’t able to be in the hospital with me. Nursing is a very taxing and demanding job, and my nurses went beyond what was expected of them and I love them very much, but some few nurses were not ok. They accused me of dumping my feeds into the nemesis bags and then “calling” it vomit and started taping my extension sets and my feed bags shut to make sure I wasn’t getting into them, and when they did see me vomit, they wouldn’t chart it. I even had a nurse tell me she had to watch me self-cath to make sure I was doing it safely and cleanly. At 16 years old, I do NOT want to have to be cathing at all. The week I was admitted for my bladder problems, I struggled and cried so much because I felt violated and like all my privacy was being taken away. Luckily, the first time I was admitted for my bladder failure, the nurses were very understanding and helped me through everything, but now this nurse was asking me to do it all again and she was not friendly at all. When we got patient advocates involved, we soon discovered that they were just covering the hospital’s butts and didn’t care about what I wanted/needed at all. Every time they would talk to us, they would defend how I was being treated with, “Well you can’t expect rehab to be easy and on this floor, we don’t want to focus on what goes wrong. We just want to help you work through it when things do.” I understand that rehab is meant to be hard and meant to push you past your limits, but I did not feel like I had the support I needed in that situation.

I also had to have Behavioral Therapy come by and talk to me. They would probe me with questions, wondering if I had body image issues, if I had ever tried to make myself throw up, if I was uncomfortable with my weight, if I had ever been abused, if my mom wanted me to be sick etc. etc.. One of the therapists would talk to me as if I was five years old and all I could do was try and be polite, smile, and just get through the half hour, forty five minutes. I could not believe that this wonderful hospital, could turn on me so quickly.

I went into the hospital in October and was not released until December; I spent two holidays in the hospital and almost missed my brother’s wedding because of my critical condition. The hospital refused to release me until I was up on my feeds because they would NOT let me go home with my PICC line and it was pulled after my last Iron infusion, a few days before I was discharged. I struggle every day because my digestive tract has such slow motility that it takes a long time for little amounts to move through my system, causing things to back up and then I vomit. I’ve thrown up 9 or 10 NJ tubes since November and am hoping to get a J tube placed soon. I vomit 2-3 times daily and always have pain.

The past year, I have spent 100 + days hospitalized, I have had 27+ emergency trips to the hospital, most ending in admissions, my longest stay being 5 weeks. My diagnosis’s are: Eosinophilic Esaphagitus, Eosinophilic Colitis, Gastroparesis, POTS, Non-functioning Bladder/Bladder failure, and Iron deficiency Anemia. We also suspect that I have intestinal and/or colonic dysmotility and are waiting for testing. I also have a slight curvature to my spine which could be mild scoliosis or I was born with it but we don’t know which one it is because we didn’t discover it until I switched hospitals. I also can not have a bowel movement without taking multiple laxatives and doing enemas every other day in order to clean myself out so that I don’t get bloated and distended, sometimes to the point where I appear to be pregnant.

It is hard living with a chronic illness. Friends eventually stop talking to you because they no longer know how to approach you. They don’t want to annoy or bug you, ask too personal questions, or say the wrong thing so they don’t say anything at all. I once was an honors student but since missing so much school, I am now considered Special Ed. and have a 504 plan in place to help me still be able to obtain my education. I find it hard wanting to get up and go to school in the morning when I don’t feel connected my peers anymore and when I don’t understand what’s going on in class. When you’re in the hospital, time stands still, but everybody else’s life keeps going. You learn that even though you’re gone, everyone you associate with continues to live their lives without you like nothing’s wrong, and that hurts a ton. And when you finally do come back, you’re so disconnected from everything that’s going on that you just don’t want to come back. I often feel guilty for my failed friendships because I feel like I’m the one who hasn’t put enough effort into it. I’m always gone so I’m never able to be there for anything for anyone and I am unbelievably unreliable, and for someone who used to never turn in any assignment late and to always be on top of my school work and never get a tardy, unreliable is one of the worst words I can think of wanting to use to describe me and yet here I am.

I hate when people accuse me of faking my illness or try and downplay it. I was a tumbler; I was on a gymnastics team for 5 years, a tumbling team for 2. I used to play and coach basketball. I would play piano and violin. I would do plays and musicals and all sorts of after school activities. Do you really believe a 14 year old would wake up one morning and think, “I’m going to fake an illness so I can trade being able to do a back handspring for being able to stick a tube up my nose; I want to stop having time for friends so I can have more time to sit in a hospital bed, hooked up to monitors with bruised arms from blown IVs; I want to give up my passion for piano and violin for a passion to argue with doctors who don’t understand and don’t take me seriously? I could go on and on. More people need to be aware and understand so less people suffer. All I want to be is a normal teenager. My life would be so much different if chronic illness hadn’t taken so much from me. People would treat me differently, look at me differently. I wouldn’t have to walk around with a tube taped to my face and my illness on my sleeve. I would be able to go hiking again and jump on the tramp. I wouldn’t have to be scared of passing out in school and/or hitting my head on the way down and getting a traumatic brain injury. I wouldn’t have to worry about surgeries, procedures, testing, treatments, etc.. My life would be so much different if chronic illness hadn’t taken so much from me. But chronic illness also gave me so much.

I’ve met incredible people who have unbelievable strength and beauty, who are understanding and caring. They’ve gone through so much and yet still know how to smile. How many people can say that their friends are superheroes? Because I can. They are the best people anyone could know. They deserve to be heard.

~~~~~~~~~~~

Rachel Nielsen

Student

“Daughter of a King.”