Three years ago, I had nose surgery - septoplasty and turbinate reduction - because my nose was constantly stuffed up. The idea was that by straightening my septum and shaving down my turbinates, there would be more room for air to get in and out my nose. It didn't really work.
Shortly after that, I started grad-school on top of my full time job. I was very stressed and didn't have time to go out dancing, which was my primary form of exercise up to that point. That combined with the apartment I was living in made my allergies go crazy, and I started having some pretty bad asthma symptoms. So I went to an asthma and allergy specialist. He did a scratch test and told me I wasn't actually allergic to anything. He also officially diagnosed me with asthma.
The treatment this doctor gave me was really expensive, and it didn't really work. I am also kind of a fan of not taking medicine unless it's absolutely necessary. I didn't go back to that doctor because I was very busy and, since I knew it was asthma, I figured I could do things on my own to make it better - diet, breathing exercises, that sort of thing.
School went on. Stress levels rose. My breathing issues got worse and worse. I moved out of the apartment with gross old carpets and a swamp cooler and probably mold because I was pretty sure it was killing me. My breathing problems didn't get better in the new condo though. But school, work, stress.... I just needed to graduate and then I could focus on my health, because I only had so much headspace.
I finished grad school in May (woot!). A few weeks after, I made an appointment with a new Asthma Doctor. He made me breathe in a tube and stuff and then he was like, "it's not asthma." He had me do several tests, including the normal blood work-up for Wegener's (which is actually now called Granulomatosis with Polyangitis, GPA for short) and chest and sinus CT scans. The bloodwork was mostly normal; the ANCA test was a little high. My chest CT scan showed some scar tissue, but I've had that for 10+ years, and signs of bronchitis. Asthma Doctor referred me to an ENT to take a look at my throat (which is where the asthma-like symptoms were actually coming from) and my nose and do a biopsy to officially confirm/rule out GPA.
So ENT looks at my nose and he sees a bunch of scar tissue, plus the bridge of my nose is collapsed a little. He thinks it looks very inflamed, but not exactly like GPA. He snips out some tissue (not the most fun experience) to biopsy - it comes back negative. This is good news. The biopsy is how GPA is usually diagnosed. He also sticks a camera down my throat and discovers that I have a subglottic stenosis (google it). He decides that he is out of his league and refers me to another ENT (Nose Doctor) who is actually not covered by my insurance so we have to go through the whole rigamarole of getting pre-approval to see him.
I see Nose Doctor. He looks around and tells me that he's not willing to put much effort into fixing my nose until I see my rheumatologist, because if it's GPA, fixing it will be a bit Sisyphean. He also refers me to his colleague, Throat Doctor, who is also not on my insurance but has a clinic once a month at another hospital that is. So I make an appointment with Throat Doctor, and my rheumatologist. Unfortunately, I can't get in to see my rheumatologist until mid October (remember, this was July when I was making these appointments), and the Throat Doctor until September.
So I got referrals for a few other rheumatologists, but the earliest any of them would see me was March. Of course, the rheumatologist that Nose Doctor really wants me to see doesn't take my insurance.
For the month of August, I'm thinking that things are probably mostly ok. I mean, I can't breathe, but we've identified why, and it's fixable. And if none of the rheumatologists in the city thought it was important to see me any time soon (they were all sent my chart, blood test results, and the ENT's notes), I probably don't have to really worry about it being a relapse, right?
Early this month, I finally had my appointment with Throat Doctor. He scopes my thoat, and basically says "Yep, that's subglottic stenosis right there, and there's pretty much no way that it's there for any reason other than Wegener's." He won't do anything about my throat until I am treated for GPA because he thinks that the whole thing will clear up with that.
Then, he proceeds to tell me about all these cases he knows of where people have Wegener's and how he had a colleague who actually died recently because of it. He didn't die from the disease itself, but from the treatment - his Wegener's was in remission, but the chemo gave him bladder cancer.
Can you believe he did that? At that point, I'm in his office crying (because PTSD) and he's telling me these horror stories. His resident looked so uncomfortable. I left the office, got in my car and started bawling. I was so upset I missed the rest of my day at work and was literally a blubbery mess until I went to bed (and cried myself to sleep).
So now I wait until October - still can't get in earlier, but I'm on the list if there's a cancellation.
Until this weekend, I haven't really felt that sick. But this Sunday, I had no energy. I slept until noon, crashed on the couch (dozed while watching TV), and went to bed at 8. Yesterday was just as bad. Today I feel a little better, but that kind of energy crash makes me worry about my kidneys.
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