By my freshman year of high school, my health was rapidly declining and on November 16th, 2012 I had an NG-tube placed. The feeding tube allowed me to get special medical food that did not cause my body to go into allergic shock. This is often called an elemental diet a part of treatment for a group of disorders called Eosinophilic Gastrointestinal Disorders(EGIDs.) My brother had been diagnosed with an EGID and although I was never diagnosed with an EGID I started to feel better once this course of treatment was pursued. The tube went into my nose down my throat and into my stomach. Obviously this no permanent plan, but it worked for a while. I always felt weird going out in public with an NG-tube It was hard to explain to those who didn't understand or simply didn't care. I mean I don't mind the stares, however, there is a way to go about asking questions and wondering what is wrong with me that caused a tube to be shoved up my nose. Eventually, I was diagnosed with Mast Cell Activation Syndrome a disorder in a similar class to the disease my brother has but treatment is slightly different.
As we tried to reintroduce food into my diet we noticed the whole trial and error thing was not working. An NG-tube is not a permanent thing so I had a surgical tube placed on January 31st, 2013. After my surgery, my life was starting to return to normal besides that fact that I was unable to eat food. Most people don't realize how life changing it is to go one day from being able to go out to dinner with your family and enjoy a meal to then spend the next several months (and now years) being unable to eat food. I don't get to eat Christmas cookies, family dinners aren't a thing in my house, I do not eat a Thanksgiving dinner, Easter eggs are out of the question and on my birthday I am unable to eat my own birthday cake. (Think about that for a minute... Food is everywhere. Our society is very much centered around food and myself along with my brother are unable to participate in this societal tradition.)
Summer of 2013 I was crashing and things turned ugly very quick. I had just had sinus surgery because my NG-tube ruined my sinuses and I was no longer to tolerate feeds through my feeding tube. My digestive tract was simply shutting down. This was the one thing my doctors had promised would never happen. They said I was never going to wind up like my brother who was fed through a venous catheter (more permanent IV) every day. My brother, Tyler had Mitochondrial Disease. His struggle has been so painful to watch. I could have never imagined myself in that place. August 2013 only nine days into my sophomore year of high school my body could no longer handle the brutal torture. My blood work had multiple critical lab values. The doctors were surprised I was still coherent upon arriving back at the hospital on that Tuesday night. To be quite honest I don't remember most things from that first week. When I walked into the hospital the weather outside was still in the mid-seventies; When I walked out of the hospital a month later it was much colder and leaves littered the ground.
One week after I was admitted I was diagnosed with Gastroparesis just like my brother and just like my brother we later learned it spread shutting down my entire digestive system. A new type of feeding tube was placed but just like my brother this did not work. After several weeks in the hospital and many difficult conversations, I allowed the doctors to place me on TPN (IV nutrition.) At the time the fifteen-year-old me was beyond terrified of the life that was ahead of me. The doctors knew my fears but it had to be done. Thankfully, I began to thrive again. I was able to go back to school! High school was a wonderful experience for me socially. My school was the one place I was able to get away from my life and feel normal. Most of the kids didn't know I was sick and even those who did never seemed to focus on me being sick. I was able to be like everyone else despite the grim outlook regarding my future.
In November of 2013, I was diagnosed with Mitochondrial Disease. The same genetic condition my youngest brother has. Mitochondrial Disease occurs when there is a defect in a person's mitochondria. The mitochondria produce roughly 90% of the energy used in a person's body. This problem replicates over time and only progresses. This causes the multiple system organ failure as the body doesn't have the energy to make everything function. This will continue until a person's body is simply unable to carry on. There is absolutely no treatment or cure for Mitochondrial Disease and only a very limited amount of research being done to study the disease. Both my brother and I are pretty far along in the process as far as disease progression those. I am lucky because being diagnosed at a much older age gives me a greater chance than someone like my brother who was only six years old at the time of diagnosis.
In January of 2014, I was told by the top specialist for my Gastroparesis that I would never get better if anything I will only get worse. He said I would never be able to work my way of IV nutrition, but God has had a much different story for me. I had a major surgery in July 2014 which placed a feeding tube separately in my intestines. For two months this worked and I made it off IV nutrition (September 2014) and was able to eat very little by mouth. However, it just wasn't my time and my body was pushed too hard too fast. I was placed back on IV nutrition a few weeks later.
October 2014 was hard because I had an extreme reaction to an IV iron infusion leaving me admitted to the hospital for 9 days. My port-a-cath was also not functioning properly so I later had a PICC line placed. This ended up being a disaster and I was fully conscious while they tried to place a PICC line and failed more than seven times. It was one of the most awful things I have ever been through and I have been through hell and back. Eventually, the PICC line failed too and I had another central line placed in my chest the following month. Days after getting out of the hospital in October I began immunoglobulin therapy for another condition I have affecting my immune system called Common Variable Immunodeficiency (CVID). Initially, I tolerated the infusion well, but the next day I had a migraine. All of this is perfectly normal because most people have adverse reactions, but my reaction later became anything but mild. I woke up with a 103.9 fever the following morning and was rushed to the emergency room. (When you have a central line a fever of 100.4 or high means I have to be admitted to the hospital for a minimum of 48 hours and placed on IV antibiotics as a precaution in case I have a blood infection as a result of having a central line.) I don't remember most of that week but I do know everything in my body was doing the exact opposite of what it should have been doing. My reaction was extremely rare because the infusion had caused an extreme drop in all of my blood counts. For most people, their blood counts are increased with the infusion, but everything in my body was being killed off by the infusion. I couldn't do anything for myself during this time, all I could do was sleep. I needed help doing the most basic things like walking and getting out of bed to go to the bathroom.
In December of 2014 I was diagnosed with another condition and began receiving aggressive treatment for that disease affecting my autonomic nervous system, which greatly improved my overall health. However, by June of 2015, I was able to go back off of IV nutrition and only required tube feeds and IV fluids again but by December of 2015 I had crashed and burned and I have been on IV nutrition ever since with no end in sight. Except for the fact that I am currently getting almost no sort of nutrition because of a reaction to another IV iron infusion back in August of 2016 and I am still suffering the effects. In 2016 alone I have had three separate blood infections one of those leading to septic shock. My central line broke in April of 2016 and I had a new central line placed just three days before my senior prom. The central line that was broken and removed ended up being infected so I was started on antibiotics. Two weeks later I developed a high fever and was sent to the hospital with an infected port-a-cath. I was barely able to break out of the hospital in time for my high school graduation. For the longest time, the doctors said I was never going to be able to go but the morning of my graduation I took a shower without passing out and I was free to go home on IV antibiotics just four hours prior to walking across the stage to receive my diploma.
The latest and most serious infection occurred around Halloween. My port-a-cath had been having problems for a while and we were trying to get help from my doctors. The day after Halloween my port was unable to be accessed on one side but the other was working. Almost immediately after getting the one side working I became extremely sick. I was able to wait it out until the following morning when I had a hematology appointment but by the time I was even worse. I had a very high fever and was taken back into isolation and admitted to the hospital. In less than twenty-four hours my blood cultures had already popped up positive. (It typically takes at least forty-eight hours for the blood cultures to show whether or not there is an infection.) That same day the ICU nurse came by to see if they could get the other side of my port working and she noticed infection was leaking out of where the needles were last placed to get my port working. She refused to access my port again because it would only flush infection right back into my body and started an IV. I am so very thankful for this nurse (she has taken care of me multiple times) because of her my body didn't continue to decline and I was able to get out of the hospital even faster than originally planned. An hour after she placed the IV my body crashed and that's when the doctor's started prepping me for emergency surgery. When they went in to remove my port from my chest they noticed there was infection leaking around my port, as well. The surgeon had to scrape out all of the infection out of my chest and he had to leave the wound open to make sure the infection could get out. Thankfully, I became better almost immediately following this surgery and three days later they placed a new central line and after that the following day I was able to leave the hospital.
Since then things have been manageable for the most part. I started college in August of 2016 and I have now successfully completed my first semester. I did fairly well despite the whole run in with septic shock and I have made some amazing friends! I even made good grades too. I still live at home which is extremely helpful for when I need it but I am independent for the most part. I know I am not normal. I am different yes but that doesn't make me any less of a human than you are! I think that pretty much sums it all up even though it is so long but it shows you what I've been through and how hard I have had to fight just to get some sense of normalcy in my life. I continue to be a huge advocate for teens with chronic illnesses and feeding tubes. Those like my brother who are coming up after me still need a voice in this world where it is lacking. Most people don't know about Mitochondrial Disease and I don't want another sibling to feel how I have felt as they watch their sibling die while nobody cares enough to make sure that those with this disease will one day have a treatment instead of being sent home to die. I still enjoying speaking to crowds at church, conferences, and being a patient advocate to doctors, nurses, and hospitals. I want my voice to be heard in big ways and this blog is the first step into making my dream happen.
My little brother, Tyler has struggled with his health since he was born seven weeks early back in May of 2005. He had emergency surgery at thirty-six hours old and we found out that he was allergic to soy and dairy. He was supposed to get better but he never did and had to have a feeding tube placed around the time that he was 9 months old. At age four Tyler was diagnosed with Eosinophilic Esophagitis. White blood cells attack the food proteins that he eats in his esophagus essentially, causing him to be allergic to all food. Later on, he began to develop motility issues with how well his digestive tract pushed food through so he had a special feeding tube placed into his intestines so he could get his nutrition, but Tyler only continued to get worse. On April 16th, 2011 Tyler had a seizure in my arms and two weeks later he was diagnosed with Mitochondrial Disease. He was diagnosed just two months before the first little boy I met with Mitochondrial Disease passed away. Tyler's diagnosis hit me hard and that's when I began being a strong advocate for children with Mitochondrial Disease and other chronic illnesses.
A year later Tyler was placed on IV nutrition because his body was completely failing him and his feeding tube no longer worked. That was in March of 2012 and he has now been on IV nutrition for almost five years. In the following months when Tyler was originally placed on TPN, he underwent testing to see just how broken his digestive tract really was. The procedure went horribly wrong and Tyler was rushed into an 8-hour long emergency surgery. The probe placed into his digestive tract poked a hole in his stomach. Tyler already only had half a stomach from his first emergency surgery when he was thirty-six hours old. They had to separate his stomach and intestines to allow his body to heal. They removed even more of his stomach and even more of his intestines because his intestines were fused to his abdominal wall with scar tissue from prior surgery. When they cut him open it tore yet another hole in his digestive tract this time in his intestines. They connected everything in his digestive tract four months later but during that time he sent Christmas 2012 in the pediatric ICU because he developed a major infection in his gut following the initial surgery.
Since then Tyler's health has been up and down. He has struggled with multiple blood infections related to having a central line for IV nutrition. He also has had a very hard time with his body being unable to produce his own blood products meaning he receives multiple transfusions but at the moment he is stable for the first time in his life. He will complete fifth grade this year. He hasn't been in the hospital since August 2016 and that's an accomplishment! The biggest issue in his life right now had been bleeding in his digestive tract. As long as he continues IV nutrition nightly and avoids the whole food aspect of life he is doing amazing! I am so proud of him for all that he has been able to accomplish despite the many challenges he has faced. He also started being an acolyte at our church on Sundays for the traditional service and he enjoys it so much. There are so many things he is unable to do because of his health but he chooses to find joy in the things he is able to do.
Originally published: July 3rd, 2014
Updated on: May 20th, 2015
Updated on: December 25th, 2016