haraggan

I've been meaning to write this blog post for ages, but haven't been able to do it. Partly I lack the energy, and it seems like a daunting task because there's so much news, and partly I can't figure out how to write it without sounding like a moaning bastard. I'm just so fucking sick of my health problems. I'm sure everybody who knows me is, too. Definite old-age: all I can talk about is my health. Or lack of it....

So, it currently feels like I see more of doctors than I do my wife. I certainly see them more frequently than I see my friends! At my current rate it's about a doctor (or some healthcare professional) every two or three days... I was supposed to be having surgery to repair my right lung, which has collapsed twice, next week. I prepared my bosses for my lengthy sick leave; my parents got their plane tickets to be here. Then the surgeon canceled the date. An unrelated blood test (looking into why I'm so run down all the time, and we still don't really know the answer to that one, unless it's just age and mood) showed that my liver wasn't functioning properly, and the surgeon didn't want to proceed until he knew what that was about. I kinda threw a fit, but the best I could do was an appointment to talk to another specialist about the situation.

Meanwhile... my lovely friend Beki pointed out to me the possibility that I might have Birt Hogg Dube Syndrome. If you haven't heard of it, that's because it's bloody rare! It's genetic, and according to the Birt Hogg Dube Family Alliance website, it's been identified in 60 families, so far. Of course, that might be out of date. Anyway, BHD is essentially a list of symptoms, some of which show up and some of which might not. The main one is a kind of skin lump. It can also cause blebs - the bubbles I have in my lungs - and, more rarely, spontaneous pneumothorax (i.e.: collapsed lung).

Well, a couple of years ago, I had a lump removed from my back by a dermatologist in New York and I've got tiny, more innocuous ones on my forehead - kind of like flesh-coloured pimples that haven't moved or gone away in twenty years. So I saw my doctor - who, like everyone else, had never heard of BHD - and she got me to see a dermatologist. The dermatologist checked me out with great excitement and diagnosed me with BHD. Apparently he knows of two other cases in the Edinburgh area (about one million people) and says that a ratio of three people out of a million is about right for this syndrome (my coworker Georgia says I should start playng the lottery. I vaguely recall my old pal Ian telling me that your odds of winning the lottery are better if you don't play it. Life is kind of like that.). My doctors here think Beki is some kind of goddess (and, of course, she is, though not just for her knowledge of BHD!).

I had a biopsy done to confirm the diagnosis - some tube-like implement bored into my forehead and yanked out one of the lumps. I didn't feel a thing, but when the local anaesthetic wore off - youch!! It fucking still hurts, and I can't move my face because any expression tugs at the stitches (I think I look like Frankenstein's Monster) and causes more pain. Yawning is the worst. Maybe I need botox. Anyway, I have an appointment - yet another appointment - to get the stitches removed Monday. I won't get the results of the biopsy for a couple of weeks yet, so we won't know for certain if the BHD diagnosis is correct, but the doctor was sure. He's asked me if I can be available for teaching purposes and conferences. I asked, but there's no stipend, so I won't be able to make a living as a medical oddity. I agreed at the time, but after the conversation with Georgia I'm not so certain.

The punchline is that collapsed lungs aren't actually the worst of BHD's symptoms. Nope, that would be kidney cancer. So the ultrasound I needed to get to look into my liver function will now be the first of many to check out my kidneys. Not many people with BHD develop all the symptoms. I've got three out of four. I suppose all I can do now is have my kidneys checked regularly (I still don't know what's up with my liver, though). Statistically it's unlikely that I'll get kidney cancer, but once you know about it, it's hard not to think about it. After all, I've bucked the odds so far... My ultrasound appointment is next Thursday. I'm still going to have lung surgery but I don't know when. With luck, it's only been delayed by a week or maybe two. Now that the doctors know I have a syndrome that causes blebs, they have to approach my case differently. This is what I was told in my most recent appointment, the one I got in place of the surgery I was scheduled to have. One surgery won't necessarily fix my lung, because I can always generate new blebs (I am a bleb and bump generating machine!). Therefore, my carte blanche to indulge all those midlife-crisis urges after surgery has been rescinded; I have to give up on my fantasies of going sky-diving and suba-diving. That's actually a bigger bummer than it probably sounds. I feel like all my dreams have been or are being cancelled and squashed and right now all I can visualize is a future of repeated tests for cancer. Presumably over time that will grow routine and I'll stop thinking about it. I certainly didn't want to write about it. Maybe someday I'll have something fun to report?