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A near death experience is never something that I thought would ever happen to me. That was always something that happened to someone on television, or even down the street. Up until the age of 23, the most serious surgery I ever had was getting my wisdom teeth out. I never thought as summer was winding down in August 2013, and as I began to prepare to move back to University, that my health and my life would drastically change in the form of a large blood clot. I want to bring awareness to my condition in the hopes that it can help someone else who has experienced this or prevent it from happening to someone else.
My story begins in May of 2013. At the time I was 23 years old and had just finished my third year of University. I was employed for the summer at a factory for plumbing products back in my hometown. I was tortured at the thought of working at this place for the summer, but I needed something short term to get enough cash to survive through my fourth and final year at University. I started, for some reason, getting acne terribly. I didn’t even have it that bad in my teen years! After discussing it with my doctor, along with its many other benefits, I was prescribed birth control in order to solve my acne issue. My doctor sent me for a blood test to make sure I was fit to take the medication. It came back with the all clear. So in the first week of May, I began the prescription.
The birth control fixed my acne but created havoc just about everywhere else. I was depressed, moody, and spent every day feeling like I was about to throw up or pass out. I was told by many that had been on the pill for years that, “you just have to let your body get used to it.” So I was giving it time in hopes all of the terrible side effects would subside.
Flash forward to the last weekend of July, 2013. At this point I did not enjoy my summer job so much I secretly wished for something to break one of my bones so I had a reason not to go to work anymore. Extreme for sure, but remember, I was still dealing with the moody side effects of the birth control pill. This wish would backfire for sure. Ever heard of the saying “be careful what you wish for?” That definitely applies here…
Every year my family participates in the CIBC Run for the Cure in memory of my aunt who died of cancer. My mom and I had travelled to my cousin's house where we had a meeting with our other family members and friends about how best to fund raise for this year’s event. I felt totally fine… I remember eating chocolate covered strawberries and snacking on salty chips. After the meeting, my mother and I got in the car to drive home. We weren’t far from the house when I went to take a breath in, and it didn’t quite come back out so easily. I felt like I had trouble taking a deep breath or exhaling properly. I remember saying to my mom, “I feel funny, like I can’t breathe properly.” I went home and I lied down.
The next day I got up to go to work. Feeling very groggy, I had almost forgot about the breathing trouble I was having the night before. I exited my bedroom and began to climb the small staircase up to the main level of my house. It's about 7 steps up. By the time I got to the top, I had to stop, bend over and start gasping for air. At this point in my life I was quite used to that staircase and had run up it, skipping a step at a time, since I was about nine years old. However, I couldn’t figure out why I couldn’t simply walk up the steps without stopping to catch my breath. I continued to make breakfast and expressed my concern to my parents. We weren’t sure what it could be. Maybe I had pulled a muscle at work?
So off I went to work that day, not feeling great in the slightest. When you are having that much trouble finding air to fill your lungs it makes your entire body sluggish. Part of my job was to lug around skids of product for orders from different companies or people. Sometimes between a couple skids for an order, it could weigh up to 300-500 pounds. For some reason, this day of all days, I had been given a MASSIVE order that once finished weighed 1,000 pounds between about 4 skids of product. I remember wheeling my skid around between the aisles looking for the product I needed for the order. I was moving very slowly because pulling a skid and gasping for air didn’t really work hand in hand. I remember when none of my coworkers were in an aisle with me, I would stop and bend over, place my hands on my knees and gasp and pant for air. This was not right! I knew something was wrong. After work I went home and told my dad it was best I go to the hospital. This is the first of many I would visit.
So my dad takes me to hospital #1 and I express my concerns regarding my breathing to the nurse at Triage. She seems concerned when I say I can’t breathe and asks the necessary questions. A short time later I am given a chest x-ray and then taken back into an emergency room hospital bed. Not too long after—this was probably one of the shortest hospital visits of my life—a doctor comes in with my results.
The doctor says “OK, well it looks like you have a little bit of pneumonia…nothing to worry about though, just looks like you have a slight touch of it.”
I remember responding, “Really? In the middle of the summer?”
The doctor just nods and writes me a prescription for antibiotics that will last about a week. She tells me if my symptoms don’t improve after finishing the medication, to come back to the hospital.
I remember telling my parents my diagnosis and they were shocked. Everyone’s reaction seemed to be, “Really? In the summer?” I just said, “Yes, apparently.”
Next I called my work and told them I would be taking the next few days off. I spend the next few days relaxing in bed, noticing my breathing symptoms improve while lying down.
It’s now been about 4 days and there is really no improvement. I had bought tickets with three of my friends to see a production of The Wizard of Oz in Toronto and given that they were expensive and non-refundable, I figure I better try and go. My antibiotics aren’t far from being done. I guess I will try to go…
Small digression—the saying “hindsight is 20/20” is very true. Had I known what was really happening in my body at this point I would never in a million years travelled to Toronto that weekend. Looking back it seems borderline reckless… but I really only knew what doctors told me…
So, back on track, here I am getting off a Go Train with my friends and we decide that we don’t want to pay for public transit and it’s a nice day… why don’t we just walk to Yonge Street? This walk to the Ed Mirvish Theatre takes about 20 minutes. I feel the fire in my lungs and I begin to get light headed. We decide we have a lot of time before the show, so why not get something to eat in the Eaton Centre Food Court? I remember walking the long distance from the escalator to the pizza place I wanted to get food from. I remember feeling quite faint. I said nothing to my friends. I didn’t want to ruin the fun…
By the time we get to the theatre, I feel as if I could completely lose consciousness, but I again say nothing. I make it through the show and head back home on the Go Train. The next day I tell my mom I really am concerned that the pneumonia has not gone away. I feel as though I should take the doctor’s advice and re-visit the hospital since my symptoms have not improved. So off I go again, back to hospital # 1.
This time was a much longer wait time and I finally saw a doctor after about four hours. The young doctor comes in and asks me my symptoms. I tell him that I was just in here about a week ago and was advised to return if my symptoms did not improve. He leaves momentarily to go review my scan from the previous week. He comes back and he sighs. “I’m sorry to tell you this, I’m not really sure what the first doctor was thinking. I looked at the scan and I see no sign of anything wrong, and I really don’t believe you ever had pneumonia.”
“Well, what is it then?” I asked, very confused and frustrated.
“Well, I think that it most likely is Post Nasal Drip,” the doctor says.
“What does that mean?” I ask.
“Well it happens when mucus from the nose runs down the back of the throat. It's probably happened due to a recent cold,” he said.
“Well I haven’t had a cold recently,” I inform him, “and, like, I can’t even walk up a small staircase without panting. It's really terrible”
He just nods as if this is typical of “Post Nasal Drip.” Them he pauses and says, “Or, perhaps it could also be that you just injured your lungs somehow.”
“I have no memory of any injury,” I respond.
“I’m sure it will pass with time,” he says. “Just go home and rest.”
So here I am. One week after this started, out of doctors notes and out of explanations. I suppose, because of my lack of physical proof of any illness, I will be forced to go back to work tomorrow…
The next day at work, I go to my supervisor's and request a sitting job as I still do not feel well. They grant me that. Later that night I go to another walk in clinic. I am prescribed a puffer and more antibiotics for a “chest infection.” The puffer makes my lungs feel worse. I work at my desk job for two days and then the next day I am told that they can no longer grant me desk work and I must go back to my regular job. I reluctantly accept this and go back to lugging my skids around. I am well aware at this point that most people think there is actually nothing wrong with me…
The next part is a bit of a blur. I remember going around the long aisles looking at my sheet of paper, guiding me to the location of the items I had to collect off the shelves. I remember feeling as if it was very possible I would throw up on the warehouse floor. I start to feel a bit panicky as I do not want to create an embarrassing scene. One of my friends at work comes up to me and asks if I am alright. I tell her I feel nauseous. She tells me I should go home. I self consciously fear everyone will think I’m faking. I continue to try to collect my items.
Then, I forget how to read. One of the most frightening and strange experiences in my life. As an experiment, try right now to look at any word on this screen and not automatically read and understand that word’s meaning. For example, not many people who know how to read and have always understood the word “apple” would suddenly forget what it is or its meaning or not suddenly think of a red fruit upon seeing it. But this happened to me. I looked at my sheet trying to see what it was I was supposed to grab off the shelf next… but I couldn’t understand the words in front of me. None of them made sense. I tried to adjust my eyes but they wouldn’t quite focus. I tried hard to remember how to read the page but I just couldn’t. Why can’t I read this?
I start to panic and I know at this moment I have to go home. I take my order over to the packing area (I am certain that none of that order was correct… so sorry to the person who received it) and then I go to my supervisor. I tell her I need to leave. Maybe my new antibiotics are giving me a strange reaction. She looks at me rather judgmentally and says, “well, take them with food then,” but she grants me permission to leave and go home.
I really should have called someone to come get me, but I wanted out of that place so badly and just wanted to go home, I drove myself. Another, “hindsight is 20/20” moment; someone who has forgotten how to read probably really shouldn’t be driving…
I get home and relax for the rest of the day. I realize I feel a lot better in terms of breathing when I lie down. The next morning I start throwing up as soon as my alarm goes off for work. My mom advises me to stay home.
In mid afternoon I start to feel a little hungry and less nauseated. I think I should maybe go upstairs and get some crackers. For the family members and friends reading this post, you will know that from my bedroom in the basement to my kitchen is two flights of stairs. I struggle up both sets of stairs and I reach my kitchen. I don’t think I can physically make it to the pantry to get some crackers because I am panting so hard so I decide to sit down on one of the stools at our island and catch my breath. I looked down at my left leg—what the!?—my leg was completely purple and blotchy. I sat and watched it for about a minute as it slowly went back to it’s normal shade of peach. That’s strange… I think… Oh well!
I grab my crackers out of the pantry and head back down to my bedroom.
This time when I start to walk my leg is starting to feel tingly and numb. When I get into my room, I sit on the side of my bed and take another look. It has once again gone blotchy and purple. I snap a photo with the intention of sending it to my mom, who was at work. Unfortunately, I did not send it to my mom. I thought… I better not make her panic at work, I’ll show her when she gets home. But about an hour later I called my mom at work. My leg was getting very bad, I was starting to limp. I told her it was purple. It just so happens that her boss had let her off work early and she was on her way home anyhow.
When my mother got home she took one look at my leg and then the next minute had me in the car on the way to the hospital. We would not be returning to hospital #1, as clearly they have completely failed me. So we drive almost half an hour to hospital #2. My mom suspects maybe I pinched a nerve? Maybe that was what was making my leg blue? We aren’t doctors, so she took me to the part of the hospital that you go for quick care, non-emergency cases…. seems crazy now.
By the time we get to hospital #2 my leg is becoming useless. My mom was practically trying to carry me into the waiting room. I am asked questions right away by a nurse. She asks me if I think I have a temperature. At this point, you have to understand, I was so incredibly sick that I barely felt like I was in my own body anymore. Basically. I was numb. I answered that I didn’t think so. She sticks the thermometer in my mouth anyways. I wish that I could find something accurate to describe the look on this woman’s face.
She practically yells at me, “DID YOU HAVE ANYTHING HOT TO DRINK BEFORE YOU CAME HERE?”
“No,” I stuttered in fear of her expression.
I had about a moment to look back at my mom who had seen the same facial expression from a few feet away, and next thing I knew, I was rushed into the back and put in a bed. I now wish I had asked what the temperature read.
The doctors did the usual blood test and urine test. While waiting for the results they gave me a whole slew of possible diagnoses. The main running theory was that I had a “Septic Hip.” My blood test showed I was fighting some sort of infection. This was beyond what they could do for me at hospital #2, but they knew doctors at another hospital (hereby dubbed hospital #3) could help me.
So I got to ride in an ambulance! Despite feeling as if I was dying, I thought that was pretty cool. No sirens, though; that was disappointing. I was surprised at how bumpy the ride was. It was actually slightly painful.
So anyhow, I make it to hospital #3. A doctor quickly comes in and sees me and he begins rolling my leg around. He asks me if it hurts. I answer that it doesn’t really because I can’t really feel my leg.
“If this was a septic hip, and I touched your leg, you probably would have hit me. You would be screaming. This isn’t the diagnosis. I am going to order an MRI,” he tells me. He also adds that he now suspects this to be a hernia. What next? At this point I had been diagnosed with pneumonia, post nasal drip, a lung injury, a chest infection and a septic hip. Bring on the next diagnosis!
After hours of waiting I get my MRI. Then, hours of more waiting in emergency I get my results. Other than a disc out in my back and a revelation that I was born with Scoliosis, they didn’t find any evidence of a hernia or anything that could really tell them what was wrong with my leg and breathing. The doctor is puzzled. I can feel him getting ready to send me home. He was out of ideas.
“Wait!” I said, pulling my phone out from my purse, “Please take a look at this picture.” I showed him the picture of my leg. At this point after lying down for the better part of eight hours, my leg wasn’t turning as purple anymore and therefore its severity in the eyes of the doctors seemed to be diminishing as well.
I show him the photo I took at home on my bed.
“Order an ultrasound,” he said quickly to the male nurse beside him.
OK…yes, here we go! They didn’t send me home! Thank goodness. The downfall is that ultrasound was shut down for the evening and I would have to wait until the morning. I had my spot in line. I would have to spend the night here but at least I would get in first thing.
The next day:
8 AM passes…no ultrasound.
10 AM passes…no ultrasound.
Noon comes… we ask the nurse, she says it won't be much longer.
2 PM passes… still no ultrasound.
At this point I have basically spent nearly 24 hours in an emergency room and I am no closer to finding out my real diagnosis.
Around 3:30 I finally get my ultrasound. I remember the technician wasn’t much older than me. I remember her face looking at the screen. I mean, I know she's not allowed to tell me anything, but that face certainly didn’t lie! She started to ask me questions like if I was on any medication. I said just birth control… she nodded slowly. She continued to make small talk. When she was finished she rolled my bed out into the hall for the emergency nurse to come back and get me.
She started to walk away from my bed and then turned back and said to me.
“Please don’t get up and walk around until the doctor comes and sees you.”
Well, I knew she found something. I wasn’t sure what, but that ominous tone of her voice still gives me chills sometimes. I really had to pee, though, so when I got back to my bed I quickly said to my mom, “the nurse says not to walk around but I have to go to the bathroom,” and I start to hobble to the restroom. I can’t even really use my leg at this point and I remember kind of giggling to myself thinking how I must have looked like Mad-Eye Moody from Harry Potter from the way I was walking.
Fast forward about another two hours and I FINALLY get my diagnosis.
I remember the doctor telling me it was a blood clot. I was immediately fearful, but then he said they needed to find the underlying cause, which scared me more. He said they had to look for cancer as a possible cause so they were going to take more blood tests. I would be spending the night here while they figured it all out.
Looking back, it is completely unacceptable the time that it took to diagnose me and get me to treatment. From the first day I went to hospital #1, to lying in the emergency room with my blood clot diagnosis in hospital #3, it had been two full weeks. Two full weeks that make it a miracle that I am even here today.
Essentially the root cause of my blood clot was determined to be something called “May Thurner Syndrome.” In short, non medical terms, it means that the main vein in my abdomen is compressed by my main artery which lies over top of it. I was apparently born like this and lived healthy and unknowingly with this condition until I was put on birth control. Birth control makes your blood thicker, therefore making it harder for the blood to go through my compressed vein. This eventually resulted in a massive clot ranging from the top of my knee to just under my belly button. The reason that I could not breathe was because as this clot was forming, it was breaking off and travelling to the lungs. As it does so it has to pass through the narrow veins around the heart. This is why many people with the same condition have heart attacks as the clots can become lodged in these narrow veins.
I am a little foggy on the details about why they didn’t do much that night. Perhaps they were trying to figure out what was best. I remember getting a stomach injection to prevent further clotting. Then I just remember being moved upstairs to a room where I had to wait until morning. At one point I started to get a bit of a chest pain. My dad was right beside me and I expressed my mild discomfort to him. He told me to let him know if it got worse and he would get the nurse. Then, all I remember is suddenly a huge searing pain, and I rolled over and slammed my hand down on the call nurse button. I remember I couldn’t even lie still or calm down the pain was so bad. Some doctors came in and tried to take blood from my artery. I couldn’t stay still so they were struggling to get any out. It seemed like the excruciating pain lasted for five minutes at least, although I am sure now it was probably only like 1-2 minutes max… then suddenly it subsided.
The nurse told me it was probably acid reflux. Forgive me for my bitterness. I have respect for nurses and people in the medical field but after two weeks of not being able to breathe, frequently being falsely diagnosed and being in Emergency for 48 hours I am pretty sure I gave this woman the biggest eye roll anyone has ever seen. I’m sorry, I am not a doctor, but that was not acid reflux. I found out later that it was likely a clot breaking free and passing around my heart into my lungs. This was the single most frightening moment of my life. Even more, looking back now, than at the time it happened.
By morning, I am a mess. I am throwing up uncontrollably and unable to keep any sort of food down. Then a man comes into my room and says there is an ambulance outside. They are going to transfer me to another hospital. A Vascular (Vein) Surgeon at “hospital #4” has looked at my x-rays and ultrasounds and would like to take me on as a patient. So, I’m off again in a bumpy ambulance.
The paramedic has an interesting sense of humour and I can’t decide whether or not I find him funny, given the circumstances. I think he was trying to keep me calm. He was reading through my chart and kept laughing about how they thought I had a septic hip at one point. He called up to the driver just to tell him the story too. Yes, this is funny, but at the same time, not funny.
Anyhow, I get to hospital #4 and the paramedic proceeds to tell a few nurses in the hallway about my misdiagnosis fiasco. Apparently, I am an interesting topic of conversation or some sort of celebrity. Hard to feel like it, though, as I’m holding a vomit tray under my chin, strapped to a bed in a random hospital hallway.
Shortly after I arrive I am taken into a room where a bunch of people are trying to take the pulse in my leg with a device that looked like a toy radio. I remember a male nurse whispering that they will probably have to amputate my leg. My mom got very angry that he said that in front of me. They were trying to find a pulse in my leg and there was nothing to speak of. A female nurse tells me she’s going to put a catheter in me since I should not be getting up to go to the bathroom. That hurt like hell, that’s all I will say about that…
I don’t think I even processed the leg amputation thing properly. I think now that I probably should have started screaming or something. I think my mind had slowed down its reaction processes maybe.
Then I met my saviour. The wonderful doctor to whom I owe my life. Since I don’t have permission to use his name I will call just call him Doctor. He told me that he wished to do a “procedure” where they would enter my vein through the back of my knee and slowly insert some “clot busting” material to slowly break up the clot. He was concerned at the severity of the clot and felt that it needed immediate attention in order to save my leg. He also wanted to entertain the idea of placing a stent in my compressed vein to hold it open for the future. I was completely terrified but Doctor assured me that were his daughter in here with the same condition, he would also perform this on her.
Doctor was completely appalled at what I had to go through to arrive to him. He apologized to me for everything I had been through, although it was no fault of his. He said at this point I was lucky to even be here. He said he was happy to see me alive and that he was able to meet me. That’s an insanely sobering thing to hear.
Side note: You should have seen my chart by the time I left the hospital…the nurses who had to wheel me around with it in my wheelchair could barely hold the chart together.
So soon after I was signing papers that I wouldn’t sue them if anything bad happened in surgery, and off I went. I remember thinking for some reason I was going to be awake during this. But I wasn’t. I remember them flipping me over on the table and the next thing I remember I was being rolled back to the ICU.
“Wow! I didn’t feel a thing! I don’t even remember anything,” I yelled as I was coming out of the anaesthesia. The nurse was trying not to laugh.
They did an ultrasound after the procedure and found that it didn’t look as great as they wanted. So they took me back in and repeated the surgery again. Then I was placed back in the ICU for the night.
The ICU was so comforting! Don’t get me wrong, I would prefer not to be there, but the nurses were braiding my hair and feeding me ginger ale. I had a personal nurse that sat at the end of my bed. This was so comforting given how scared I was. I would try to get to sleep but as soon as my heart rate slowed my machine would beep and I would wake up in a panic. The nurse told me it was just my heart rate lowering as I was trying to sleep. So I didn’t sleep at all that night, but I definitely made friends with my nurses as they rotated every 12 hours.
The nurses in the ICU asked me if their music was bothering me. I said no, that I liked the music as it was helping me relax. I told them:
“If the other patients don’t like it though, I don’t mind it being turned off.”
“Everyone else is sedated,” the nurse said with a little laugh.
I thought that was pretty funny at the time and also comforting. At least I didn’t have to be sedated…
The next morning the doctors came and brought me in to receive the stent. It was to be placed to hold my vein open and then hopefully this would finally be over.
This basically sums up my vein problem! I also have that lovely little stent…
The stent placement was successful. Everything looked good. Now I had to start to try to walk again!
I hadn’t walked for almost five days at this point and the first time they got me to put my leg on the ground it was crazy! Think of the worst time your leg ever fell asleep and then multiply that by 100! I couldn’t stand it! I was walking around with a walker in the halls of the hospital and felt as though I was getting a lot of stares.
The first time I looked in a mirror after almost a week was disturbing. I looked so skinny. I had lost 10 pounds in the span of only a few days. I compared to myself to Bella in the Twilight Saga: Breaking Dawn when she's pregnant and looks in the mirror (for those of you who get my reference).
A lung scan determined that I did have blood clots in my lungs. These would be broken up with blood thinner medication for at least six months. I had to be injected with radioactive material in order to get this lung scan and I joked on Facebook that I now “knew what the Imagine Dragons were talking about” as "Radioactive" had just come out at the time. I actually had to breathe in chemicals and inhale and exhale (as outlined in the song).
My mom and I now call this my theme song. Humour is sometimes the best—or only—way to cope with something serious.
I was moved out of the ICU, and that was really scary. I had to share a room with a lady who snored and I no longer had my personal nurse. My sister and my mom brought up my portable DVD player and I watched that all night. I pretty much hadn’t slept for a week at this point. I watched Pride and Prejudice and The Perks of Being a Wallflower. And a few days after that, I was able to come home. What followed was three months of stomach injected medications, which I had to learn to do myself, and months and months of doctor's appointments and check ups. But three weeks after this whole event took place, despite anxiety and feeling less than perfect, I got myself back into the classroom at university and finished my fourth and final year!
What I want people to take away from this story are two things:
- Never be afraid to advocate on your behalf when it comes to medical problems. I was afraid to and it almost cost me my life. Trust your instincts. Doctors should be more diligent, this is true. I often thought I was cast aside (especially in hospital #1) due to my young age. No one is too young to have a serious problem or too old to be helped when they have one. Be persistent and get as much evidence as you can. A simple photo I snapped on my bed, I believe, saved my life.
- If you are a woman and you are reading this I ask you to look for warning signs if you are about to start taking birth control and make sure you are fit to be taking it before hand. My doctor did more than many doctors do and she had me take a blood test prior to starting the pill. Unfortunately this did not help me due to my undiagnosed and rare May Thurner Syndrome, which can only be diagnosed with an ultrasound of your veins/arteries. However, since my diagnosis I have read countless stories of other women getting blood clots from birth control due to a blood clotting disorder they never knew they had. One simple blood test would prevent this happening to a lot more women. In our society today, women can be easily prescribed birth control without medical tests. I, in no way, judge anyone on birth control and I am not telling anyone to stop taking it. Rather, I am asking women to be more diligent in making sure it is safe for them to take. One day I would like to advocate for mandatory blood tests before birth control is prescribed.
I do not take it for granted that I am alive and here today. It is easy to get caught up in your day to day life and forget how lucky you are sometimes. It has been nearly five years and I feel the effects of this event in my body every day. But I know because of my doctor who saved me and maybe a whole lot of luck and love from my family in heaven, I have survived this mostly intact. I have my leg and I have my life. I will be eternally grateful for the known and unknown factors that led me to surviving something that I probably shouldn’t have. I want to stress all the reasons to be grateful that I am alive and that I am here. That is a miracle in itself.