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Hello from the beautiful Rocky Mountains in Alberta, Canada. I've been looking through this site and wow, there's lots of us considering what a rare disease this is. My story is like most in that it started out slow and undiagnosable and then kinda just exploded.
I live a pretty healthy lifestyle, ski a lot, bike a lot, spend quite a bit of time playing outdoors. I had my first child when I was 40 and she's now 3 (three and a half if you ask her).
This all started in January of this year (2010) when her and I were driving up to the ski hill to go for an afternoon of playtime on the slopes, and my ears popped on the drive up to the mountain. They didn't unpop, and at the beginning it was nothing more than a nuisance. The popped feeling in my left ear lasted for a few weeks, at which point I thought I should swing by and just chat with a doctor, as it was a little annoying, nothing more. The doc told me that it's common and usually clears itself up within a month or so. By the end of a month it hadn't cleared up, and now it was full of fluid which made hearing a challenge, and I thought I should check in with the doc again.
This brought on the first bout of antibiotics. Didn't clear up. Now it's starting to hurt a little - very little, but it's there, so go back to doctor, second bout of antibiotics. Pain in ears and head is starting to elevate, but still nothing I can't handle. I'm now at about two months since the first ear popping experience. Go back at two and a half months for another bout of antibiotics, and now it's time to get a referral to an ENT. The pain is starting to get nutty and the referral process is taking a bit long. I finally get to see an ENT and he puts tubes in my eardrums to drain the fluids and in theory it will make it all better. This is when the proverbial poo hit the proverbial fan.
The first day after getting my tubes put in I was so elated that this whole thing is over and I can now go on. The next day, the pain came back after my uphoric transe, and it came back with a vengence. I started to pop Advil like they were going out of style. At first it kept things at bay, but that didn't last very long. After a week and a half I had put down a couple of bottles of Advil, lost about 10 pounds, and found myself at our local hospital emergency room (it's a tiny hospital with not much for diagnostics, so all they did was give me a shot of Terridol and some perkacets and sent me packing). The percacets and I did NOT get along well, and I'm not going near those babies again with a 10 foot pole. Back to the ENT in the big city (4 hour drive from where I live) so that he can tell me that I'm a bit of an anomoly and should just keep putting the drops in my ears and take another bout of antibiotics (he still hasn't looked in my nose or throat yet, so that would make him not an ENT, but just an 'E'). Drive back home and suck it up for another week. Can't handle the pain, so I go to Emergency in the town next to us (about an hour away- -they have better diagnostics). Get the once over, and the doc is concerned that I've messed up my stomach with pain killers, my liver enzimes are up, and my kidneys aint looking too good. I've also lost about 15-20 pounds by now since getting the tubes put in two weeks prior. He sends me back to ENT, or E, and he tells me that everything is OK, keep putting the eardrops in, and my liver enzymes look no worse than, get this, "someone who's been on a bender over the weekend". At this point, I'm having a hard time walking, eating, drinking, breathing, living....
I left feeling like I've lost my mind.
I decided to stay in the city as things were not feeling very good in my body and sent my husband and daughter back home without me. The next day I decided to go to Emergency as I was not feeling like I can hang on too much longer without the aid of some fluids and nutrients if nothing else. At this point three weeks after the tubes were put in, I had lost almost 30 pounds, and was looking like a gray shadow of my former self.
May 06, 2010. Evening at Emergency. I go in and tell them the whole story. It was funny because it was that night that I had my first nosebleed and ended up spitting up a golf ball size chunk of hunk of blood that came out of my sinuses. I couldn't breathe so they took some chest X-rays, and that was where the whole thing took a turn. My lungs looked like they were completely invaded, so that night the ER doctor told me that what I most likely have is secondary cancer of the lungs, and my next step is seeing an oncologist who will also determine where the primary cancer is located.
WHOAH!!!!! Really? No way my daughter is going to grow up without remembering her momma. So I'm sticking around for at least a few more years. That's what went through my head after the 'Whoah'
May 07, Marta gets stuck in a 'House' episode. I'm in the secondary emerg, waiting to get a bed and get admitted. I'm on morphine now, so the pain at least is gone. I see a group of doctors in the distance, huddled in a circle and talking with the occassional darting glance shooting my way. They are talking about me - for sure. Suddenly they all stream up and line up in front of my bed. One of them is not wearing a smock, and I looked at him, and said 'you guys are like House, and you must be the 'House' character, although you look much much nicer.' I was dead on. It was a group of Internal Med doctors who work as a team and they came to me to see if they could take my case on as a teaching case as they "highly suspect that the earlier diagnosis is incorrect and they think they know what it is". I was thrilled to have them take my case on, and rightfully so as they were like angels sent from heaven to fix this whole sorted ordeal. This was at about 7am, by noon, I was in for a full cat scan to establish weather the spots on my lungs were Wegener's. The scan came back inconclusive. By 5pm the 'team' had set up a lung biopsy for the next day (Saturday May 08) and I was in first thing in the morning. My dream team, as I've called them since (they actually have a team name, 'the green team') had the surgeon come in on his day off, they had a pathologist come into the operating room to examine the biopsy right there and then, and they opened up the operating room for me alone. I feel like I had horseshoes up my bum, I was sooooo lucky..... We came out of the operation and they were 99.9% sure that it wasn't cancer and was indeed Wegener's.
May 09, 2010. Meet the rheumy. I'm recovering from surgery, hopped up on morphine, and the doc comes in and tells me all the gross side effects from the drugs, but that this is our only option really. It was like I was watching some movie, it was quite surreal. Although there is no question in my mind that - yeah baby, bring on the drug cocktail.
May 10, 2010. Start the cocktail. Re-boot the computer.
Fast forward to July 08, 2010. I'm back home, hanging out with my little monkey and her beautiful daddy. Went out for my first mountain bike ride - two months to the day of the lung biopsy. Feeling stronger each day, got a lot of cheek action happening on my face, but that makes for more fun at home, we have all sorts of cheek jokes going on. I still can't hear out of my left ear, but that's become quite insignificant relatively speaking. I have started to wean off the prednasone, (I started at 60mg and am now down to 50mg, 45mg starting this Monday). Haven't quite figured out the sleep thing yet. My hemoglobin is almost back to normal, so I'm not turning all technicolour shades after taking my cyclophosphamide, which is good as that was quite bizzare. I never know if the weird little things I'm feeling inside are Wegener's based, crazy toxic drug cocktail based, or just in my head, but I think that'll come with time - knowing that is. I'm loving every moment of life, and am thankful to my amazing DREAM TEAM, my beautiful family, my friends, the town I live in (which has the most amazing people) and whoever came up with the drug cocktail to keep us Weggies alive and kicking.
So there, that's my story... hopefully the momentum curve I'm on keeps going in the same direction and I can't wait to shred up the slopes this winter.
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