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About 5 years in the past, Bren Cox, 57, knew one thing unusual was happening along with her well being. Her medical doctors repeatedly advised her that her signs, like complications and fatigue, have been only a regular a part of ageing and that she was making a giant deal out of nothing. However when Cox awoke in the midst of the evening and her head harm so badly that she couldn’t even see, she had her husband take her to the ER. That kicked off her prognosis journey, and Cox finally discovered that she had polycythemia vera (PV), a uncommon blood most cancers. Within the three years since she was recognized, Bren has tried completely different remedies, discovered the right way to grow to be her personal advocate, and created an Instagram account to assist others with the illness. Right here’s her story, as advised to well being author Alice Oglethorpe.
Generally I say it began in Might 2021 as a result of that’s when my well being rapidly declined and I ended up within the hospital thrice in a month. However in hindsight, I can see that it began 15 months earlier than, in late 2019. Though I’d by no means been a headache particular person, round then, I began getting debilitating migraines. They have been so extreme it felt like my head was going to blow up—generally, I might have auras the place I’d see lights, or it felt like I had goggles on and couldn’t see usually. However the complications have been so unfold out, with months between them, that I didn’t give them a lot thought.
Round then, although, I additionally began having decrease again ache and feeling drained on a regular basis. My signs bothered me sufficient that I introduced them as much as my medical doctors—greater than as soon as. And each time they’d be dismissed as no huge deal. I used to be advised that what I used to be experiencing was not unusual for somebody of their early 50s and that what I used to be going by means of was in all probability linked to menopause. Or they’d blame it on COVID-19, which I’d gotten fairly severely in 2020. However none of my medical doctors ever ran any assessments or referred me to a different supplier to see what was truly happening, so I simply handled feeling crummy on a regular basis. I used to be sick of listening to these explanations about why I felt the way in which I did; I didn’t know what else to do.
Then, in Might 2021, my well being went downhill quickly. Within the span of some days, I grew to become so exhausted—it was as if I had extreme jet lag. My head additionally started feeling actually heavy, like I had a really unhealthy chilly and was about to lose consciousness, so I went to the ER. Due to all of the strain I used to be experiencing behind my eyes and brow, the physician thought I used to be having an allergy assault, so he handled me for that with out even operating assessments to substantiate his hunch. Issues solely bought worse after that. The next week, I awoke in the midst of the evening, and I couldn’t even see as a result of my head harm so badly. My husband drove me to a unique ER, the place I bought blood work and a CT scan. That’s the primary time I heard the phrases polycythemia vera, or PV. I wasn’t recognized but—I’d must take a check and see a hematologist, which is a blood physician, to substantiate it—but it surely was a risk.