By James, Granulomatosis with polyangiitis, United States, March 1, 2018
I first had symptoms in November 2010 when I was 12 starting with major headaches, which turned into very painful earaches that were so bad I was willing to go to the hospital on Christmas Eve and miss Christmas. Sadley the winter in Germany gets very bad and we were snowed in. A few days later I finally got to a German hospital and after about half a week I was diagnosed with Wegeners Granulomatosis now called Granulomatosis with I Polyangiitis/Vasculiitis due to being a nazi. I was then taken to a US military hospital to be medivac and treated at “Walter Reed Army Medical Center” in DC now known as the “National Museum of Health And Medicine” since my father was in the military. I was diagnosed with GPA there as well to confirm it. While there my left lung almost callapsed and my kidneys were at near failure so I was moved to the Children’s Hospital in Maryland were I underwent dialysis and plasmapheresis and constant drawing of blood with was actually my favorite part. Near the beginning of my series of treatments I was told that I was going to be hospitalized for six months, but a week later they said I improved very fast and was healthy enough to go back to Walter Reed as an outpatient. Me and my parents were very surprised. We stayed at a place in base called the fisher house with about 12 rooms for other soldiers and they’re families to stay in.On every Thursday a limo would come and pick several of us up to go eat free seafood from Red lobster. While that was fun the chemo therapy Cytoxan I had started was tiring, about 3 hours of fluids and then the 1 hour Cytoxan. I did treatments every two weeks for the six months I was originally supposed to be hospitalized. Once June hit we were able to leave, and end up moving to San Antonio, Texas where I ended up getting treated at Brooke Army Medical Center. I was on a lot of medicine, about 19 individual pills a day. After about two years my doctor said that there was no sign of the GPA in any of my test, I was clear. 11 months later it came back and attacked my lungs, it’s like it couldn’t have waited one more month to make it a year. My lung doctor said he wanted to try out Rytuximab because it’s been known to work on many patients with similar or the same problems. I had six treatments one per week and I was good they wanted me to stay on daily medication as well as a monthly steroid infusion to keep the GPA in remission. About six months later I grew tired of taking medicine and was in the mind set of why take any of this if it’s just gonna come back anyway. So I stopped all my medicine instantly and months later it came back but this time in my throat, I had a kind of growth of the GPA. But this time i was on Rituxan and Cytoxan for 3 months. By the end of it there was no endangering sign of an GPA. Several months later I turned 18 and ended up with a few adult doctors, one that constantly annoyed me about taking my medicine, although she knew that the constant chemo was damaging my memory causing my to forget many things and when I wanted to take my medicine I couldn’t remember to do so. They started me on a treatment called Methotrexate. I was skeptical about taking it because although it’s rare this treatment can cause lung problems, liver damage, lumps(tumors/abnormal growths), blood clots, diabetes, kidney failure/disease, SIEZURES and CANCER. I mean they might as well put me down cause if they don’t this medicine will lol. I was on the pill version but it didn’t sit well with me and I was able to take the shot version which worked better for me, until I had abnormal numbers so I was told to stop and that’s where I am today. Although I went through everything and came out on top, there were a couple of time for I was so stressed unknowingly that on once on impulse I tried to end it all, but I’m working on coping and currently me and a few people are working on my dream of owning a comic book business and when it gets big I’ll invest in building an orphanage or foster home.
P.S. Sorry for the lengthy story