Diagnosed at 16
Hi, I'm Ian. I have just recently found this site, and saw an opportunity to meet other great people who share the same disease as I do. Anyway, here's my story.
In the summer of 2011, I started getting skin legions, fatigue, frequent nosebleeds, and headaches. Mostly concerned with the skin legions, since i thought the fatigue was from playing tennis so much, i went to see the dermatologist. They said i probably had a mild case of eczema, saying it will just go away if i didn't continue to itch it and used some cream they supplied me with. Feeling better, the days passed on until late August, when my junior year of high school began. Around that time, i started feeling some severe chest pain, getting worse by the day. At first, i thought it was just a pulled chest muscle from playing tennis too much, though eventually it was to the point where every time i inhaled i basically curled up on the floor in pain. On September 4th, a Saturday night, i went to a clinic complaining about the chest pain. They took an X-ray, and came back with some bad news; I had 2 unknown masses in my upper left chest, right below my collar bone. Being rushed over to my community hospital that same night, a CT scan was done, coming up with no new results. Fearing that i had cancer, i was sent to Children's Memorial Hospital in Chicago, about an hour away from where i lived. Arriving there at about 1 in the morning, i got into my bed, and fell asleep.
After a couple days passed of blood results revealing higher levels of some liver enzymes and so forth, a lung biopsy was called for to see what these masses were. Having agreed to do the biopsy, I was put out by the a anaesthesiologist. I woke feeling groggy, and wondering what would come of the results. A day or two past, and in came my doctor with some news; apparently i have this disease called Wegener's granulomatosis. The doctor told me that he's never seen this disease in someone as young as I am (As it is a rare disease, it's even more rare in children). This was confirmed by the ENT specialist who also did a biopsy of my nose, throat, and mouth, seeing as i had gained some rather painful sores in my mouth to the point my only intake of food was chocolate milkshakes. Days past, and now they are wanting a liver biopsy since it is about twice the size it should be. But instead of going directly over the liver for a biopsy, they needed to go through my inferior vena cava (the jugular) for the biopsy since a direct biopsy would be extremely risky due to its inflamed state. My parents and I said no, since we didn't like the idea of a needle to retrieve a liver sample go down my neck and through my body like a snake crawling through the african plains. So they started me on the steroid prednisone, a chemotherapy called retuxinab once a week for 4 weeks to reduce my white b-cells, bactrim as an antibiotic, as well as calcium, vitamin d, and a nasal ointment called bactriban. After being home for the first time in 12 days, i realize I've lost some weight as long as several things in school.
The school work was a pain, the fact being i was in all honor courses and 2 AP classes. I ended up dropping an AP class and getting some tutoring, while immediately returning back to school half a day almost everyday to not fall even more behind than I already was. Being back in class made me feel normal again, even though some students thought i had moved or transferred schools. Besides that, there was the chemotherapy and 2 doses of salumedrol once a week. I was on 30mg of prednisone a day, along with the other medicine I've already listed.
But wait, my liver and spleen are still enormous! Which is why i eventually did get the liver biopsy after my liver and spleen weren't really returning back to their normal state. But this time, they could do a direct biopsy since it was a little better than before. Days later, when the results had come back, it turned out my liver ducts were scarred from PSC liver disease. This is where I start taking a bile thinner called Ursodiol for probably the rest of my life. A couple weeks later, I went in for an MRCP scan to see what ducts were damaged. Luckily, they were mostly smaller ducts, and not the larger ones. I also went in for an Upper and Lower Endoscopy, but thankfully, it revealed nothing abnormal.
This was all about 7 months ago, but then came another trip back to the hospital. Over my winter break, on December 17th, 2011, i went back since I had a horrible cough. Another Lung biopsy revealed that my granulomas on my chest were getting smaller and hollow, but also infected with some bacteria, just like my lungs. This turned out to be a pneumonia, and some antibiotics cleared that up. After 6 more days in the hospital, being release a couple days before Christmas, and I was happy to be back out in the world again.
So far, there hasn't been any flare-ups (to my knowledge), and life has been pretty smooth. I definitely see things different now, and hope the best for everyone with hardships. For those who are newly diagnosed with WG, all i can say is the earlier they can catch it, the better of a chance they have to fix it.
Mostly, however, I'm extremely grateful for all the love and support I have received and still am to this day. From my family, from my friends, doctors/nurses, and even teachers for being so helpful with getting back to school. Without them, I'm sure I would have lost hope before I even began to climb this mountain of a disease
“Yesterday is history, tomorrow is a mystery, today is a gift of God, which is why we call it the present.”
― Bil Keane
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Originally Posted by Ian Privett
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