My Story

As promised, here is my personal tale of the Wegener's Granulomatosis beast! Some of it may be stuff I've already talked about in previous posts, but you'll get over it.

Once upon a time, or more precisely, sometime probably in November of 2001, I had a cold. It was a typical coughy sneezey uckiness that colds usually are, but it lingered a bit longer than it should have. After a while, I went to my doctor and he gave me anti-biotics. Funny thing was, the cold didn't improve. In fact, in got worse. I was tired and woozy all the time with a persistent cough. And I was having nosebleeds just about every day.

Nosebleeds are not a new thing for me- I've gotten them my whole life, especially in winter when the air starts to get a little bit drier and colder- so these didn't cause much concern at first. They started lasting longer and longer though and occurring two or three times a day. I was a little worried (and frustrated, 'cause you really can't do anything while your nose is bleeding), but when I mentioned it to my parents, they dismissed it. I had seen doctors about nosebleeds before, and they have never been very concerned or helpful.

Since my cold wasn't getting any better, I went back to my doctor who gave me another antibiotic. When he looked up my nose, like they do, he started a bleeder. After I bled in his office for about 15 minutes with no sign of it letting up, he sent me across the hall to the Ear Nose and Throat (ENT) guys. They managed to get the bleeding to mostly stop and then cauterized some bits of my nose. On my way out the door, it started bleeding again. So I went back in the chair and the ENTs cauterized some more. Again, as we were leaving, it started bleeding again, but there wasn't much tissue left to cauterize so we just left.

The end of December and the beginning of January are kind of a blur for me. I was still coughing all the time. I couldn't get a full nights sleep because I would wake up at 3 or 4 in the morning with a bloody nose that would last an hour or more. On New Year's Eve, I had plans to go to a party, but around 9 I fell asleep on the couch and slept there until 1:30. I slept through the big moment! I hadn't done that since I was 6.

When school started after winter break, I had a hard time getting through the days. One day, my nose started bleeding in the middle of my first period math class. I spent the next hour and a half bleeding in the bathroom. I just barely made it to my next class before it ended and I went home after that. I was light-headed from loosing all that blood, and I was tired (the normal state for me those days).

The nosebleeds started coming with pain. My nose hurt all the time, so I took ibuprofen for that. Not such a good idea in retrospect, as ibuprofen is a blood thinner and I was, you know, bleeding a a lot. It was a good day if I only bled for half and hour.

The week I went to the hospital, I went to school on Monday and came home before first period. I slept all day and went back for play practice. I had a fairly decent role in Macbeth and I didn't want to lose it. The next day I slept all day and just made it to rehearsal; the director ran through my scene really quickly and then sent me home. I didn't make it at all on Wednesday.

Wednesday night I had another nose bleed that lasted 2 hours. I was in tears from the pain and the frustration and the lack of sleep. My parents called my doctor (at 1 am) and he told us to go to the emergency room at Primary Children's Hospital in the morning. So on the morning of January 10, we did. At the ER, they ran some tests and took a chest x-ray. There were spots on my lungs so they said it might be pneumonia, but my other symptoms didn't make sense with that diagnosis. They decided to check me in and run some more tests. Once in my room, I called the drama teacher and told him I was in the hospital and wouldn't be at rehearsal. I also called my friend Cory, who I was supposed to go to Jr Prom with that Saturday and told him I couldn't go.

The next few days I barely remember anything. I slept most of the time. I was on morphine for the pain in my nose. Twice a day someone would come it and take blood for more tests. I must have seen every doctor in the area, but I was so out of it, I had no idea who they were or what they were doing. Finally Dr. Bohnsack figured it out. All the signs pointed to Wegener's, but he recommended doing a biopsy of some of the tissue in my nose just to be sure. So into surgery went I.

After the biopsy, my nose was packed with gauze all the way up to my brain (or so it seemed). I looked like Marcia Brady after she got hit with the football. The results came back positive. I remember not really understanding what it meant, but both my parents broke down when the doctor told them, so I knew it was really bad. The only thing I could relate Wegener's to at the time was AIDS, the only other auto-immune disease I had ever heard of. Naturally I freaked out.

I started treatment right away. I wont go into what it was, because I did that in my post yesterday. Actually, I think I may stop here for now. This post has been awfully long. I'll continue the story tomorrow.