A Toronto Transformation

DVT

Stylish Medic Alert Bracelets

Medic Alert Bracelet

It occurred to me recently that a woman with chronic DVT, a previous pulmonary embolism and a clotting disorder should probably be wearing a medic alert bracelet.

I wore one when I was still on blood thinners, but for some reason, once I went off them, I never bothered to update  my jewelry.

The bracelet I had before was fine. It did the job, the words all fit on it. But it was not particularly cute. And one of the links was a bit jagged and kept scraping my wrist. And, call me ridiculously vain, but I’d really like my next one to be cute. And not scrapey.

So far, my dear friend Etsy has yeilded the following prospects (as well as the one above):

medicalert2

medicalert3

medicalert4

I’m not sold on any of them yet. What do you guys think? Have any of you come across any simple, elegant stylish medic alert bracelets?

Also, for the record, I realize there’s probably nothing more dull than hearing about my medical issues, but guys, this is a style issue. Which is totally more interesting…right?

Bitter Pill – When Birth Control Kills

Last week, there was much discussion on Canadian news outlets following a report from Health Canada linking the Yaz and Yasmin birth control pills to 23 deaths, and numerous other instances of DVT in Canada. A chill settled over me as I stood beside the radio and listened to the mother of 18-year-old Katelynne Fisher, an otherwise healthy young woman who collapsed and died at the gym after suffering a massive stroke. She had been on the pill for a month.

Last week, I also received my final call from the department of Haematology which followed up with me every few months for the past 8 years to see if I’d had more clotting or new symptoms of pulmonary embolism (the worst of which is death, by the way) as part of a study I’ve participated in in the hopes of helping the medical community learn more about DVT and PE.

Obviously I survived my experience with PE (I was an otherwise healthy teenager on Marvelon28) but it was a near thing and it could so easily have gone a different way. What if I hadn’t been home with my parents, who insisted on taking me to emerge? What if we’d arrived at the hospital a little later?

I try not to trifle with what-ifs too often. That way lies madness, I think.

But, man.

“There but for the grace of God go I” never felt so apt.

I was 19 and lived. Katelynne Fisher was 18 and tragically did not.

Comment sections following the news of these 23 deaths are full of people saying that women know the risks of taking the pill, so it’s essentially on them if they are unlucky enough to experience the side effects.

Yes, the possible side-effects are usually listed, (though not always, and certainly not with context) but what 14 year old, desperate to end the fainting, vomiting, and excrutiating pain of a messed up menstrual cycle, is going to think that those risks apply to her? What teenage girl, or grown woman thinks her doctor would prescribe something that really might kill her?

Common lore has it that if you’re an otherwise healthy, young, non-smoker, the warnings on the package must be meant for someone else.

Meanwhile, we don’t test girls for underlying conditions like Factor V Leiden, the genetic mutation I have, which increases the likelihood of developing DVT and pulmonary embolisms. I realize it’s a relatively rare mutation, but with it, I should probably never have taken anything with estrogen, and have been advised never to in the future.  That would have been great information to have prior to nearly losing my life. For most girls and women, it would just be a blood test, and maybe it would feel like a waste, but for some of us it could be life-saving. If testing 100 women, means saving even 1 life, wouldn’t it be worthwhile?

We also tell women what the side-effects could be, but not what symptoms to watch out for. For more than a week before I was rushed to hospital, I thought I had pulled a muscle in my left leg. I thought it was a little odd that it didn’t seem to be improving, and that whenever I took a step, I had pain in my left glute. I also thought I might have a mild urinary tract infection or something, because I was peeing a lot, and feeling weird pressure in my bladder. It wouldn’t have occurred to me in a million years that those were symptoms of a far more serious clot, reaching from my left calf up to my groin. I assumed if it was something really serious, it would hurt more. Of course, with DVT and PE, by the time you have chest pain severe enough to take you to the hospital it might be too late.

Bayer (the company behind Yaz) is certainly not the only culprit here. It’s just the latest.

Years ago, I was shocked and dismayed to learn that the birth control patch some of my friends were crazy about, while being touted as having the same amount of estrogen as the combined birth control pill, was actually releasing way more estrogen into women and girls’ bloodstreams as it was absorbed directly without being digested like the pill, meaning again there was a far higher risk of clotting than most women using the patch realized.

Why would Bayer, or any other company in their position not work to make a pill with a LOWER risk than other pills, rather than just deciding that even though their pill is more hazardous to women’s health than others, the benefits still outweigh the risks? They didn’t for at least 23 women in Canada so far. I’m sure those women would have preferred acne or painful periods or pregnancy over death. Why not work to make progesterone-only birth control pills, which have no increased risk of clotting, more reliable instead of paying billions of dollars in settlements to women and the families of women whose lives have been irreversibly damaged or even lost because they took medication as prescribed by their doctors?

To me, it’s just another example of drug companies being all too willing to play fast and loose with women’s health, in the name of greed and the medical community being far too lax when it comes to making sure that what’s prescribed to young women doesn’t pose a significant threat to their health. And it’s totally unacceptable. We are not guinnea pigs and we deserve better.

A (mostly) Wonderful Weekend

tulips, hospital bracelets, Lady Gaga t-shirt

obligatory concert tee; Gaga earplugs; tulips from mom (who bought me so many I had to put these ones in my pasta jar); and two of the three hospital bracelets I sported this weekend.

Well. It was an eventful weekend in my little world.

As I may have mentioned here once or twice as well as to anyone in earshot for the past couple of weeks, I was scheduled to take my dad to see Lady Gaga and was just a little stoked about it.

Unfortunately my partial snow day Friday was wasted on a trip to the emergency room, because as I had not mentioned here or to almost anyone, over the past couple of weeks, I’d been having some unwelcome and familiar symptoms in my troublesome left leg, with a twinge or two of chest pain thrown in for good measure and my out-of-town hematologist recommended I get an ultrasound right away. I guess that’s what I get for bragging about my good fortune in the blood clot department. Heh.

The doctor I saw was concerned enough with the results to prescribe a type of blood thinner that has to be injected into my stomach once a day (not ideal for a fainting-prone needle-phobe, which I most definitely am) at least until he could have the hematologist there look at my results as it was not immediately clear whether I indeed have a new clot, or if the scans are just picking up the already diagnosed chronic DVT. He told me to return the next night at 8:00 for the next dose.

“OK, Will do,” I said automatically, always eager to be on good terms with anyone who might posess the power to keep me alive.

“Erm, only? Is there any way I could come in a little earlier? It’sjustI’msupposedtobegoingtoaLadyGagaconcertwithmydad” I squeaked like an over-caffeinated mouse, as my heart dropped at the thought of having to tell my dad I couldn’t go.

Fortunately the doctor (and in fact, everyone I encountered at Toronto General) was lovely and good-humoured and said he supposed since Lady Gaga hung in the balance, they could accommodate me a little earlier.

And so it was that we made a pit stop at emerg on the way to the concert. Me in the world’s shiniest superhero pants and jungle-print bustier and my dad, in jeans, a sharp blazer and, because he is the best, gold eyeliner.

I like to think that our somewhat outrageous appearance might have cheered up some of the people we passed in the hospital. Or at least distracted them from whatever they were there for.

We met Red and her dad at the concert and I honestly don’t know who had a better time, us or the dads. As the music started and Gaga took the stage (atop a unicorn, of course) I grabbed my dad’s arm and proclaimed my excitement for the scrillionth time that night. The music vibrated up through my feet and matched my pulse and I thought, well, whatever happens next, tonight, life is pretty damned good.

And now we wait.

Wish me luck!

A Different Kind of Anniversary

A couple of times a year, I get a call from my hematologist’s office. The friendly researcher asks the same set of questions:

Any new pain or swelling in either leg?

Any trouble with breathing or chest pain?

Have you had any testing done during the past six months to check for blood clots?

Yesterday, as I cheerfully answered every question in the negative, it dawned on me that it was eight years to the day since I was admitted to hospital with what turned out to be DVT and a pulmonary embolism.

While eight years of living with chronic pain/discomfort and the knowledge that there is this hostile thing in your body just lurking around, making it hard to walk and impossible to run while it apparently waits for another opportunity to try and kill you is not something I would wish on anyone else, it does give you a certain amount of perspective.

Because while it’s eight years since the most terrifying and painful experience of my life, it’s also eight years since I was really, really lucky.

Eight years, and (knock on wood) I get to answer no to all of the hematologist’s questions.

And maybe, most importantly, eight years of no matter what is going on in my life at the time, being able to look back at that day and say to myself:

You’ve survived worse. You’ll survive this too.

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