The Beginning of a Long Journey

Like most of my peers, I believed I was an average healthy person while attending my junior year at Elon University. Although, that was not the case as I would find out in November of 2015. I found out something that not only devastated me, but also caused a loss of hope for my future. Everyone has their ups, and their downs, but I was on a never ending rollercoaster, who’s only direction was down. Many people have seen myself post pictures of medical treatments and stuff, but many people also do not understand what is going on. So, here is my story, and why you should pay attention to your health and your body, it is more important than anything else.

I graduated from high school in New Mexico in May of 2013, and had finished my 14th year of basketball (like my siblings, we all started sports at a young age). I never experienced issues with breathing or coughing while playing varsity basketball for my high school. I was excited to attend college and play basketball intramurals at my university. Again, I never experienced any breathing issues or a chronic cough while playing basketball or exercising throughout my freshmen year. Although, I did experience an unusual amount of sinus infections, but most students become ill their first year because it’s a new place and dorms are not the most germ-free areas. Then, the summer of 2014, I developed a cough and breathing resistance after running throughout my hometown.

That prompted my parents and I to decide to see my primary doctor and ask: what is going on with this cough? Simple solution we all thought: I have asthma. Now, my sister has exercise induced asthma, so the assumption was that I was following the path of my sister and just now developing asthma (unusual at an older age). I received my first medications to reduce my asthma and be able to exercise and play basketball. Towards the end of the summer I wasn’t getting that much better as the chronic cough was still there, so I went through my first dose of prednisone (an aggressive medication that suppresses the immune system and reduces inflammation). Also, the dosage of my asthma medication was increased. Then, back off to college I went for my sophomore year with my parents as we drove my car to the university.

Throughout my sophomore year, the chronic cough was still prevalent, but more aggressive than before. Sinus infections had become the norm for me at this point, and I would suffer my 5th (or 6th, can’t remember anymore) concussion (suffered several others during basketball in high school). Towards the end of the year, I began wheezing a lot and then it become more difficult to breathe and exercise. That prompted my doctor to send me to an asthma specialist in the summer of 2015.

The asthma specialist would begin conducting various tests to figure out and explain why I have this chronic cough and breathing problems. More asthma medications would be introduced, as well as other types of medication. At this point, I was on 3 inhalers, a nebulizer (kind of like a breathing machine), and 3 different type of medicine pills (asthma, allergies, and acid reflux). I had an x-ray done on my chest, nothing was visible through that. So, as the asthma specialist continued to help, symptoms would get worse. Prednisone was introduced again, but this time, only 2 days out of the 10 days I felt better (usually it does a good job of suppressing a cough and such in those 10 days). School was starting around the corner, so we had no choice but to place the investigation of my health on hold until November, when I’d have a chance to see the specialist again.

The happy part about this time span, is that my sister had a baby, and my niece is wonderful to be around. Other than that, this semester turned out to be my worst semester so far (not grade wise). I was able to stay in contact with the specialist through a chart system through the hospital, and provide updates on my status. The coughing was worse, breathing became difficult, and sleeping at night wasn’t the easiest. My roommate, Jake, and I would always go for runs every Sunday, and would workout at the gym time to time, if my body was up to it. I noticed the breathing and running became more and more difficult (I wasn’t out of shape). Then, the week before Thanksgiving or the week before that, Jake, our friend Juice, and I were running and the two of them noticed how difficult it was for me to continue running. Now, I’m very competitive and do not give up, so I would run through our running exercises. At this point, I was grabbing at my chest a lot and grasping for air every second. The coughing was constant and would not stop. I notified the specialist and he ordered a CT scan of my lungs before my scheduled appointment.

It was Monday, and all I did was drive to the hospital, get a CT scan (which, contrast was injected into me to highlight blood vessels, and I know now what a hot flash is like, just a funny thing I experienced). I didn’t think much of it. The next day, the specialist saw me, and went over the CT scan with me. He stated that there was an abnormality at the bottom of my lungs (an infection), and that they were very inflamed. He then suggested I should see a pulmonary specialist that day, and I did. Everything happened so quickly that day. The pulmonary specialist said this infection was quite large and that I should get a Bronchoscopy  done the next day. Essentially, they put a tube down my throat while I’m sedated to collect cultures, to determine what infection(s) I have, and to flush out my lungs as there was a lot of sputum in my lungs. The pulmonary specialist told my parents that my lungs were very red and enlarged, which isn’t a good sign.

On Friday night, the day after Thanksgiving, I received a phone call from the pulmonary specialist, and basically said I could not get on the airplane back to my university on Sunday for precautionary reasons. A potential bacteria that was found, may be contagious (later on it was deemed that it wasn’t). So, this altered my schedule to return to school, and I was sad to not return on Monday, but still believed I could go back midweek. Then, the next day, the pulmonary specialist called, and talked to my father, where they believed it would be best for me not to return to Elon. That was tough for me to handle. Elon is my second home, I love being there. I was able to finish my classes and finals from home.

Later on in December, I learned I have three infections, a Staph infection, a bug that goes hand in hand with the Staph infection, and a rare lung disease called Mycobacteria Fortuitum (we’ll call it MF, or as the doctors and my parents say, “The Beast”). I did not understand the severity of “The Beast” until January, these last few weeks. At this point, the Staph infection is gone. This week has been the hardest week in my life. It doesn’t compare to those with cancer and other life threatening medical conditions, but it isn’t fun. MF is a rare disease that less than 1% of people in the world get. And I have a rare strain of it. Only 25 case studies have been conducted, and I may become the 26th. This is a very rare, and very serious disease that will fight my body for a long time. Wednesday, January 13th, I went to the hospital to have a PICC installed. It is a tube that goes through my arm, and rests above my heart inside my body. It wasn’t the best feeling in the world, but I got used to it.

With this, I’ve found out how long this will take and the timetable for this rare disease. I was on 3 weeks of IV antibiotics/chemo therapy style treatments, which went into my PICC. I became very tired and fatigued when taking it, so I was basically sitting around for those 3 weeks. Now, I take two oral antibiotics for the course of 12 months, or longer. These oral antibiotics are better than the IVs on my body, but I will still feel miserable at times if I do not get a solid meal before consuming an antibiotic. Sometimes, even with food and nausea pills, I will still feel terrible. Also, I am being seen by an Immunologist as well, because it has been determined I have a rare immunodeficiency (immune system disease) as well. It’s not a matter of if I have one, it’s a matter of which rare immunodeficiency I have. I will find that out in the next month. After, once those antibiotics are done and signs of the bacteria have dissipated, another time table of 12 or longer months begin for the full recovery. If the MF comes back, it all starts over. I’m looking at about a 3 year timetable to fully recover. It will be tough, I will feel weak, but I won’t give up.

Why am I telling you all this? Because, many people don’t know what is going on. I do appreciate the support from those who say they are praying and are here for me without asking immediately what is going on. This is also a message to anyone who is reading this: please watch your health, and regardless if it is a cough or something, continue to pursue help. Your health is important, and it shouldn’t be ignored. You can always return to your life once you are healthy.  To start off 2016, I will be working to recover and become healthy. I urge all of you to remain or become healthy, and to stay strong.

As of today, January, 31st, 2016, I have completed my three weeks of IVs, a few days into oral antibiotics and was able to enjoy my 21st birthday. I have felt miserable the last month, and continue to every other day. It’s hit or miss, I’ll have days where I feel normal, and I’ll have days I feel like laying down for the day and ignoring everything around me. But, that doesn’t stop me, as I am still going strong. I am writing this at the Atlanta airport, where I have been fortunately granted the option to return to school because I fought and recovered enough to continue school with a scale back on the work load.

Don’t ever give up, keep your chin up and keep on smiling each and every day.

Christian Johnston

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