Cardiac biopsy

I've made the decision to participate in my EP's research study, so I'll be having a cardiac biopsy within the next several months.

The test will involve taking a number of small samples of right ventricular tissue from my heart and sending them on to a specialist in Ottawa (I keep picturing little bits of my heart being stuck in the post). While the biopsy is mostly for research purposes, it could tell me a number of things, including whether I'm able to pass on Brugada syndrome to any children I may have. Dr. Sneakers is also hoping that, since I can't have an MRI with my defibrillator, he'll be able to use the procedure as an opportunity to look for scarring related to my HCM.

We will, hopefully, kill a small flock of birds with one stone.

Here's what I've learned from my piles of paperwork: similar to my EP study, an incision will be made in my groin or neck (I'd vastly prefer my groin - since I'm going to be awake, I'd rather people were fussing around down there than right in my face. I think it's going to be neck, though). A catheter will be guided into my heart. It will have a scissors-like handle at one end and a little snipper at the other. I'll be awake and able to see fluoroscopic images of my heart on screens above my head - by far the coolest part of my EP study.

I'm excited both to learn more about my condition and to have the chance to participate in research. I've benefited so much from research in my lifetime - I've gone from a little kid eating crushed up aspirin every day and sitting out gym class to an active adult whose disease activity is, comparatively, very well controlled. I've got a box in my chest that could save my life one day. I've got drugs that keep my heart rate and blood pressure nice and even. Pretty lucky.

So that's that. Not technically a whole lot of fun, but we'll learn from it, and I'm looking forward to that. And I'd never pass up on opportunity to munch on some hospital food.

Infused (And, Dr. Sneakers Redeems Himself)

When doctors keep wandering by, stopping at the foot of your bed, looking through your ECGs and muttering, "interesting," it is safe to assume it's going to be a long morning.

Today was my procainamide infusion test. I showed up bright and early (and hungry) at the hospital, was given a bed and a hot blanket (I flipping love those hot blankets) and had my IV placed by a very nice nurse. He even heeded my request to please put it in my arm, as my hands are feeling rather poorly this week.

The nurse who performed the study was named Andrew. He explained that he would infuse the drug for 30 minutes, and that I would stay in bed for an hour afterward to recover. Then he hooked up my ECG and blood pressure cuff, and set up his chair right next to me to monitor the entire thing. It was nice to have him there to chatter to, and it helped take my mind off cheeseburgers. I was starving.

My blood pressure dropped a fair bit and I felt quite dizzy, but other than that, the procedure wasn't terribly unpleasant. However, Andrew kept printing off ECGs and raising his eyebrows at them; the electrophysiologist on call, whose name was Bobby, popped over every few minutes to look at them, too. It was funny to watch; Bobby kept talking about how "interesting" they were and Andrew, who clearly wanted to keep me calm, would look up and me and say, "interesting, but not SCARY. NOT SCARY." Bobby went to fetch a med student to look at them as well. I don't know how many times I heard the word "interesting."

Because the procainamide had induced changes in my heart rhythm, Andrew next infused another drug to help empty my kidneys and liver of the first one more quickly. This one made me feel a bit disgusting, and in the end I was glad of the hour-long recovery period.

Finally, Dr. Sneakers came in. I was skeptical; I hadn't particularly liked him the last time we met. I like him much better now. First, he read through my entire chart. Then he read through the results of the morning's study. Then he sat down beside me on my bed and hashed it all out.

The results, he said, were "interesting" (surprise!). They were not what he had expected. The last time I'd seen him, he had said that me having both HCM and Brugada Syndrome would be like being struck by lightning twice; my positive response to my 2008 procainamide challenge was, he felt, just a fluke. This morning, though, I tested positive again. He compared the results with the abnormal-but-not-sure-why ECG I had in September and with my last drug challenge, and told me it appears I do indeed have Brugada.

I was quite surprised. There was a split second where I thought, "oh, come on. This too?" I suppose he'd had me convinced as well that I didn't really have it.

He stayed with me for a good twenty minutes, discussing the implications of the diagnosis. I'm to be careful of fevers. I've got a list of drugs to stay away from. But I've also already got my defibrillator, and there will be no changes to my treatment. He also asked me to think about having a heart biopsy; this will be primarily for research purposes, but it will also help me to know more about my chances of passing on the disease. I'm considering it, and leaning toward saying yes.

I have a lot to think about, and probably to write about, too. For now, though, I'm home, tired and headache-y, but also, perhaps strangely, happy that my defibrillator is there for a reason.

I need a book!

I've been advised to bring a book to my infusion test on Tuesday. A nice way of telling me to plan on being there for a while, I think.

I'm in the middle of The Girl with the Dragon Tattoo (although I've already read the end - one of my very worst habits) and enjoying it, but it's massive and heavy and not really ideal for shoving into my purse.

What should I read? Something sprawling and Victorian and on my list of have-to-reads, like Middlemarch? A good mystery? Something new and popular?

What are your favourite books?

Saturday morning

I am finally feeling much better. Not just a little better, but almost completely back to normal. Except for the rib, which is still pretty sore, I'm great - not coughing, breathing normally, and not exhausted. Just in time for all the rain we've been having to finally stop.

Saturday was the first really fun, not-sick-at-all day I've had in a while, and I took it all to myself. I cancelled some half-hearted plans I'd made with friends, and then I slept in, lingered over my tea and the paper, and made my way to my city's Saturday antiques market.

I've been looking for teacups and falling in love with nothing. I got a set of these, which I adore (despite the crappy photo), for $12:

But I'm most proud of these. I haggled for them, which was a thrill, and got them for next to nothing. They're from a series of eighteenth century engravings called Cries of London, which I'd read about before. I flipping love them, and I can't wait to hang them up:

Then I got a cup of tea and an absolutely blow-your-mind apple fritter - it had warm apple slices and custard - custard! - inside it. Apparently these things are quite well-known, but I had yet to be initiated.

All in all, it was a very successful first day of not feeling like garbage. Thank you all for your good wishes over the past month! 

How you know it's getting old

When you fumble with your syringe and it lands, uncapped, needle down, on a carpet covered in dog fur - and you just pick it up, blow on it and shove it in anyway.

Well, either it's getting old, or I'm just really, really lazy. Probably the latter, but hey - a little dog fur never hurt anybody.

The start of my modelling career

We had photos taken for our company website today.

I'm still sick-ish. Much better, but not great. I feel like I could sleep for days. But, I dressed accordingly and came into the office. From (well-meaning, I know) co-workers, I heard:

"Your eyes are swollen! Are you ok?"

"Woah - you're so skinny. You've been really sick, huh? ..Not that I'm saying you look sick!"

"You look exhausted!"

From the photographer, I heard:

"Alriiiiight. Let's make this dangerous!"

I'm pretty sure the only thing remotely dangerous about me today was the chance that I might fall over on someone, but I giggled nonetheless.

I took yesterday afternoon off to sleep and am doing the same today. Tomorrow, I plan on feeling like a million bucks.

Very, very impatient

Yesterday, quite suddenly, breathing started to hurt. Coughing (which I am still doing a lot of) really hurt. Getting in and out of bed or rolling over was ow-ow-ow-ow-ow.

My first thought was pleurisy, which I'll admit I'm unreasonably paranoid about since my first highly unpleasant experience with it. I went back to my doctor.

Not pleurisy, but possibly a cracked or bruised rib from so much violent coughing.

But, after almost a month of this, I've now got a steroid puffer to use over the next week. If I'm still coughing then, I'll have another chest x-ray (no, thank you). Meanwhile, I skipped my methotrexate injection last night and emailed my rheumatologist to let her know.


**

In truth, the main reason I've been so grumpy about my health lately is that there are so many good things happening right now, and I want to be able to enjoy them properly. I feel as though I'm only half-experiencing things. I know many of you have been there, or are there even now.

First I flared. Then I couldn't eat. Then I caught this virus. Then I couldn't talk. Then I started getting nosebleeds. Then I did whatever I've done to my ribs.

Whose body is this? It doesn't feel like mine.

**

When I'm feeling better, which will hopefully be very soon, I will blog about much more interesting things. Promise.

Update: We can now add "coughing up blood" to the list of fun things I'm doing. On the upside, this steroid inhaler is pretty awesome. I might marry it.

Good things

My body feels out of whack. Still hacking away - I can talk reasonably well now, but when I tried to sing last night (I've missed three weeks of lessons), no sound came out. I've had a couple of other infections, lots of nosebleeds, and a consistently upset stomach from the junk I've been taking for my throat. I'm frustrated with myself, and my confidence in my ability to muddle through is dipping a little.

That said, of course, I am muddling through. I only missed two days of work. I drove myself and a friend to Toronto on Sunday to see Wagner's The Flying Dutchman, which I did not cough through (plus, there's nothing like Toronto driving to give my self-confidence a bit of a boost). I haven't been on the elliptical in a while, but I've been on lots of walks.

So, good things:

• I emailed Dr. Cufflinks' secretary this week wondering if there was some way I could ask him briefly about a new drug I may be taking. He wrote back himself about an hour later, with a long explanation of the drug's mechanism, his opinions and my options. After moaning about doctors and appointments and tests last week, I felt very good about the relationship I have with him.
• It's spring! Leaves are out. I'll be birdwatching with my Dad on the weekend as the warblers fly north.
• My infusion test for Brugada Syndrome is soon, which means I will either know more or know that I won't likely get any answers, and either is better than wondering.
• I'm loving my old-fashioned Enbrel, sans preservative (I know I'm a big baby, but I hate that stuff!). Now, without it, I'm rotating injection sites like a pro. I don't even have to say the F word.

And I know there have been many good things happening with you, too. Cakes, lilacs, laughter, even wonderful baby news.

There. That's better.