Updated: Feb 15, 2021
This is my story of surviving a Type B Thoracic Descending Aortic Dissection that was initially misdiagnosed before it was discovered by chance over a year later.
Earlier this year, in January 2020, I had never heard of an aortic dissection before. I had been feeling increasingly unwell for over a year - including tiredness, dizziness, shortness of breath, and depression. A sudden severe cough spurred my roommate to insist that I needed to go to the hospital to get myself checked out. A few close friends had been concerned about my health for a little while. Upon reflection, this was a call from intuition. I was coming down with fairly consistent flus, as if my immune system was not functioning properly. I called my family doctor to see if I could get a same-day appointment, and as I could not, we went to the local hospital. They decided to do an X-Ray to check that I didn’t have pneumonia, and found something abnormal in my chest area. It looked like something was enlarged. The doctor asked if I had ever heard of Marfan Syndrome or connective tissue disease - to which I replied “no”. She did one small physical test - noting that I have a tall stature and hyper-extended joints. She said she would like me to go get a CT scan at the larger hospital in the next town within a day or 2, and that they would contact me.
There must have been an issue with the communication as I was not contacted, and I phoned them the following week to get booked in. Due to the (what I perceived as) casual nature of which they were dealing with this, I didn’t think it was anything serious. I had no reason to think anything was going on with my heart or aorta, and prior to this, neither did they. In hindsight, I know the doctor and radiologist did me a life-saving favour by noticing this (no big deal, hey). Next week in the exam, I received a second CT scan immediately after the first. I was then promptly taken to emergency, put into a hospital gown, hooked up to an IV, EKG machine, and left with no information. They didn’t tell me what was going on in the exam, or even after they saw the dissection. My friend was waiting just outside and we had planned a day after - thrift stores, drug stores to buy make-up we couldn’t get in our town, followed by work that evening. A middle-aged female nurse with a gentle expression came in about 30 minutes later and politely asked “Has anyone told you what is going on, dear?”
I was standing and walking; let alone snowboarding, working on my feet full time, smoking and drinking with friends, meanwhile I had an 7cm aneurysm ready to rupture inside of me and an aorta that was dissected from thoracic to abdominal. I was told by the emergency room doctor that I was “a medical miracle” and he was in touch with specialist surgeons in the province to try to find me the best possible solution, as my life was in serious danger. He even took me over to show my friend and I my CT in complete disbelief. This was not what I was expecting on an inconsequential, grey Wednesday morning in the middle of January. Another friend came, and the two sat beside my bed while I periodically sobbed as the nurses sought arrangements to get me to Vancouver. I was air-lifted to Vancouver General Hospital the following morning and given emergency surgery to replace my descending thoracic aorta with a Gore-tex graft.
During my recovery in the hospital, the surgeon asked whether I had had an episode of extreme pain in the past year or 2 in my upper abdominal area. He said my dissection had been there for some time, and that the aneurism was extremely enlarged. I immediately knew the moment that it happened. It all came flooding back in a rush of clarity. All these questions about my health that had been bothering me became much clearer. For over a year doctors had believed I had suffered a severe muscular back injury related to the physically demanding job I had been doing at the time.
In the middle of the night, in August 2018, I woke in excruciating pain; tearing pain, searing pain throughout my entire body. I’d never experienced that much pain. I was screaming for the coworker I shared my cabin with (this was a remote mining exploration job). I was in so much agony that I vomited, I was shaking; I couldn’t stand. Nothing I did alleviated it - I laid on the floor, I rolled around for the entire night. I wanted to die. The next morning I tried to go to my shift. I was the only female on my crew, and I was trying to be strong. My coworkers were so supportive and concerned. I still couldn’t stand up on my own, and had to be taken off site and to the nearest town. The first aid attendant at camp thought I had kidney stones. They tested my urine at the health centre and found nothing. “It must be muscular.” the nurse said. I went to another small hospital. I was given antibiotics through an IV as they didn’t know what else to do. I was then sent to a larger hospital in the nearest city of Prince George. I couldn’t walk at this point - I needed a wheelchair to get into the building and it felt like a nerve was being hit that was causing me to randomly vomit. Nothing was ever discovered. They just didn’t even consider aortic dissection, especially in a young, active person. I just carried on with “chronic back pain” at 28. I was left with no answers. I was left wondering how a muscular tear could cause something so excruciating - maybe I was crazy; maybe I made it up in my head. Were they convinced I was even truly feeling that much pain? The risk of death is highest in the first 2 weeks of a dissection - I became a survivor in this moment, and continued to be one for over a year without realizing.
Let’s fast forward to now: November 2020. It’s been 10 months since I received my emergency surgery. I received genetic testing and it was found that I have a disease causing FTAAD - Familial Thoracic Aortic Aneurisms and Dissections - and that I am defective in a protein that provides strength and elasticity to my blood vessels. It is a progressive disease and currently my aorta is dissected below the graft and down the abdomen. It is being monitored and I will have to receive a scan every 6 months. Another surgery is imminent. There is no history of this or any connective tissue disease in my family that anyone is aware of. At the age of 29 I am now taking hypertensive medication to control my blood pressure and relax my blood vessels. However there is ultimately no “cure” for a progressive disease such as this. Further awareness and research is needed to be able to understand the factors that result in this silent killer. Aortic disease and events are relatively rare, but very commonly misdiagnosed. I was one of the lucky ones. Many are not so lucky. In the two instances that I sought medical help, I wouldn’t be sure of the exact number of X-Rays, ultrasounds and CT Scans I’ve received that relate to medical professionals trying to figure out my condition. There are many unknowns involved in diagnosing it and it can manifest in various ways. The way that they most often find it, is when it’s too late.
This is my story. And there are many others like it. There are many things that can take our life in this world - we are defined in many ways by our mortality. This can divide us - and yet it really is what brings us together. We are living in constant knowledge of it; trying not to fear it, trying to become comfortable with the idea that it is forever looming over us. But one day, we know, it will be on our doorstep to take us away. Sometimes, like for me, it just knocks on the door - almost to make sure you remember that it’s there. We can brave this alone; or we can brave it together. Coming together to raise awareness, share our stories and connect with each other is a powerful tool. It may be cliche, but there is truth to it. And we should be led by truths. The truth is, my entire life got shook upside down - but that’s what saved it. If something in your body is telling you “this is serious; this isn’t okay.”, then you should listen. I was turning away from my body because it was sick. I was angry with it - that I felt so weak and out of control. But really, it was screaming for help.
Nowadays, there is still a lot of uncertainty, but I try not to think about the distant future too much, and focus on what I can control. Certain parts of my lifestyle have had to change but overall I feel like everyday is a blessing. It’s a fine balance between enjoying the youthfulness I still carry in my spirit; and protecting my sensitive body from harm. Some days are harder than others, but there is so much hope to be found in sharing our experiences, and our suffering. For in our suffering, we find our strength. We are all fighting; and in our own ways: we are all survivors.