What's Your Clot Story?
Growing up in Peterborough, then moving to Hamilton back in 2007, young Emily had no idea her life was about to change at the start of her adulthood.
“I initially felt the pain while lifting something over my head at work. I had thought I pulled a muscle in my neck, at the base of my head.” - Says: Mrs Vokey
Like so many young women, Emily developed a blood clot due to her birth control pills, which occurs in about 1/1000 women. A medication which after September 22nd 2016, she could never take again. Emily was told by her thrombosis expert, that due to the CVT and the dangers or reoccurring blood clots in future, her birth control pills would be detrimental to her health.
Women who use transdermal patches or vaginal rings are 7.9 and 6.5 times more susceptive to getting a venous thrombosis vs. those who don’t use them. Oral contraceptives with Desogestrel, Gestodene, or Drospirenone were associated with a significantly higher risk of venous thrombosis than oral contraceptives with Levonorgestrel (ref: 1,2).
“I was more relieved at the beginning. I was concerned I had something worse.I was afraid that I would have to undergo a massive brain surgery because I had such a bad migraine. My time in the hospital was filled with anxiety and fear, I was afraid that I was going to have to stay in the hospital for a long time since my condition was considered rare. I had so many people on my team and asking me questions about it.” - Affirms: Emily
Emily’s CVT had reached her brain, after passing out on her bathroom floor she was rushed to the ER at St. Joe’s Hospital in Hamilton. Accompanied by her mother, boyfriend and friends - her life threatening event needed to be treated immediately. Emily could easily suffer loss of function in her body, and even possibly die due to blood being blocked in her brain.
“My time in St. Joe’s ER was a blur, literally! I couldn’t see and I could hardly speak. I wasn’t able to open my eyes because the pain was so bad. I remember thinking; let me just lay down and sleep! But no one would give me a bed with a room, since of course the hospitals tend to be packed. I couldn’t stop being sick, which made the migraine even worse. Think of the worst headache you’ve ever had, and intensify that by 1000.” - Inserts: Emily Vokey
As beds in Ontario fill up due to an influx of patients recently, people like Emily are forced to suffer in the hallway, waiting sometimes for hours, just to be given medication and sent home as an outpatient. Some are lucky enough to be given a bed to stay, others not so much.
“I was admitted into the hospital on September 24th and stayed until October 1st. It would have been way longer, and thinking back I probably should have stayed for the duration that they wanted me to. But I pushed and pushed, as I hated staying in there. I couldn’t watch TV, let alone use my cell phone or read a book.” - Says: Mrs. Vokey
Prior to being discharged, Emily was given Morphine for the pain, while she underwent an MRI and head CT.
“The CT scan showed that I had a cerebral Venus Thrombosis, a blood clot in the Venus system of my brain. The blood was flowing to my brain normally, it just couldn’t get away from it.” - Affirms: Emily
Quite often, patients experience chronic pain and most importantly, jolts of pain from nerve damage. When a blood clot is formed and is lodged in the venous system, it pushes, stretches and moves the affected area to the max. Blood flow is forever trying to pass the blockage, thus stretching the blocked location and causing it to move in ways we do not understand. Nerves are sometimes pinched and even twisted up with the clotted venous system, thus causing nerve damage in the process. Clots Matter founder, Martin Lemieux is forever testifying that he is forced to take Naproxen for the inflammation and Baclofen for the nerve damage.
“The pain was so intense and the pain meds only helped so much before I grew tolerant to them – which scared me, because I wasn’t about to come out of there addicted to Dilaudid (Hydromorphone hydrochloride). I was immediately put on Heparin, and shortly after Fragmin. Then I was given Fragmin and Warfarin, which is what I left the Hospital with. Other medications included; Morphine, T3s and Gravol for the nausea. Shortly after being admitted it came to be that I was having double vision. The pressure that was in my brain was causing my Optic Nerve to be damaged. I was given a medication to take which helped relieve the nerve pain, but I cannot remember the name. It tasted awful!” - Inserts: Emily
Blood clot survivors are often given anticoagulant therapy while in the hospital and are usually discharged as outpatients to a local Thrombo clinic for blood work and assessment for a 6-12 month period. There isn’t much doctors can do with clots, except for helping the blood flow and hopping that the body will break up the venous thrombosis over time. In rare cases, an operation is scheduled to go in and remove the clot immediately. So for the most part, patients are given anticoagulant injections, pain meds are are told to rest at home.
“The next 8 months I continued as an Outpatient and saw Dr. Fredrick Spencer at the Fontbonne Building at St Joseph’s Hospital. Those months were spent on blood thinners. Three of those months were spent taking the medication for my Optic Nerve damage as well. I had to do multiple visits with the Stroke clinic at Hamilton General Hospital and see a specialist for my eyes. Although I did not have a stroke, my condition was very similar to one so the stroke clinic wanted to be sure I was not at risk for a stroke. I also had to stop taking any form of birth control and I will never be allowed to be on one again.” - Confirms: Mrs. Emily Vokey
Mrs. Emily was lucky to have survived such an ordeal, blood clots are the 3rd leading killer in Canada. It’s important for patients to know the signs and to call 911 immediately. There’s always lessons to be learned in life, as Emily explains to eloquently.
“I fear that I will have another blood clot again one day. When I was going through everything, I was scared that I was going to become a huge burden on those around me. I was worried my boyfriend would leave me, and I felt bad for my family for having to care for me when they had their own things going on. But, I later realized it was all in my head (pun-intended)! I was constantly reminded that how loved and supported I am. I had such a strong support system behind me, which I am so grateful for.” - Asserts: Mrs. Emily
Patients who survive blood clots are forever changed. They look at life differently, sometimes with certain fears of having reoccurring clots, and others take it upon themselves to seek out communities to level their fears. Hope for a patient could be the difference between someone who’s: reverting inwards and isolated vs. a person who is motivated to be and do more for themselves and others.
“Clots Matter was a big support for me, as well the World Thrombosis Day Organization. When I learned about these sources, I felt less alone in it all. I found that how I was feeling was normal and there are so many people out there that are just like me, going through very similar things. All things aside, I hope to never be a patient again! If I could tell others in my situation, it would be this: Be patient with your recovery, and ask questions. Don’t be afraid to voice your opinions and feelings. It’s your health after all.” - Says: Emily
We asked Emily what her life as a patient looked like and this is what she had to say…
“I slept maybe 4 hours each night while in the hospital, up until the pain got easier to manager. Then my routine went back to normal. (6-8 hours). I wasn’t allowed to use many sharp objects, and had to be careful wherever I went. I couldn’t eat much broccoli or spinach – my favorites! Too many blood thinning properties. A lot of my time in the hospital was spent lying in bed, bored. I eventually pushed myself to get up and walk around, where I would spend some time in the lounge. It was probably somewhere between a 8-10 pain level most days, it took a long time before I no longer had a headache. I was so tired! Thank god for Coffee and Tea – which also helped my headache, as caffeine helps to open your blood vessels! I had to be careful when I was exercising, I had to watch my balance and not do anything too strenuous.” - Reveals: Mrs. Vokey
Emily is currently going to school for Radio Broadcasting, her dream is to being on air and maybe someday into voice acting. If you wish to help Emily reach those goals, please let us know. She currently requires professional audio equipment and a laptop to record from home in order to harness her skills.
On behalf of patients across the globe, I want to personally thank you; Mrs. Emily Vokey for taking the time to write down your experiences as a blood clot survivor. Your story is an inspiration to those who have lost hope. You were once without a future ahead of you, but now your experiences as a patient provide a glimpse of what other patients can strive to emulate.
“Your Path Might be a Lonely One, But You're Not Alone!” - Martin R. Lemieux
Martin R. Lemieux
Clots Matter, Founder & President
1-Venous Thrombosis in Users of Non-Oral Hormonal Contraceptive: follow-up Study Denmark
Hormonal Contraception and Risk of Venous Thromboembolism: National (Denmark) Follow-up Study