A Toronto Transformation

Pulmonery Embolism

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 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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