I was diagnosed with Idiopathic Pulmonary Arterial Hypertension in December 2013. Before diagnosis I had just started my first real grown up job. I was managing a busy office at the University I graduated from. In June of 2013 I was flown out to Montreal to have a week of training for my new job. My flight to Montreal was my first flight, and I was terrified. I watched Lost too much when it came out. (To the left is a picture I took on the flight home.) I would spend hours each day after my training wandering around the city. I would then go back to the hotel and work out. I never felt short of breath, and I was certainly during active walking around the city. It was an amazing experience. Never did I think I would graduate from University with a degree in Fine Arts and find such a fulfilling business oriented career. When I came home from my trip I felt the most sick I had ever been in my entire life, which says a lot because I was often ill as a child and have had my share of hospital stays. I didn’t want to miss a day of work so I went to work despite having flu like symptoms for a few weeks. I recovered and felt better, life resumed and I felt fine.
A very flattering picture of me eating a hamburger in Montreal
At the end of August of 2013 I was in a bus accident on my way uptown after work. When I left work at 5:00 pm it was bright and sunny out. The forecast called for rain, but it was so nice out that I decided to leave my umbrella at the office. By 5:12 pm a tornado warning from Environment Canada went out on to almost everyone’s phone on the fully packed bus. About a minute later the sun was gone. The sky was completely grey and it was raining down sheets of water that blurred the windows on the bus. Moments later I heard screaming from other passengers on the bus. A bolt of lightning hit an electrical box in front of the bus causing a small explosion. The bus had stopped moving. Then an electrical pole had fallen just missing the end of the bus where I was sitting. A live electrical wire dragged down the window in front of me and hugged the bus' window. Next; two larger trees fell just in front and just behind of the bus.
A picture of the bus after the accident
There I was, stuck on a bus in the middle of an almost-tornado near a construction site. Debris continued to be picked up into the sky and thrashed to the ground. I thought to myself, this is it, I am signing off. Everyone on the bus was in a panic and of course I was stuck near engineering students who were discussing how screwed we were with that wire snuggling the bus. A tweenager decided this was a good time for an Instagram session. I can’t decide who wanted to break her phone more; her father or me. I decided to call my parents, just in case things got any worse. It was a very scary phone call- part of me thought there was a good chance I would not make it off of the bus. I asked them to stay home because the weather was so bad, there was nothing anyone could do. Emergency workers didn’t come until after the storm cleared up. It felt like an eternity trapped on that bus. My anxiety was through the rough. Once the storm passed a bunch of university students came out of their houses to take pictures on their smart phones of us trapped on the bus. Great. There we were, trapped on a bus, surrounded by dozens of people taking pictures of us. Eventually emergency responders came. The roads were blocked so I had to walk 30 minutes to meet my dad at the nearest open road. It was difficult walking by all the wreckage, but I never felt short of breath. In fact, prior to this I was working out for nearly 2 hours each day while working full-time!
By the middle of October I started to notice that I was short of breath, but I have always had asthma that has flared up during autumn so I didn’t think too much of it. It really didn’t feel that out of the ordinary. After all, I was followed by a man after getting off of a bus after work in October. I was able to haul some ass to my destination (the hair salon) where I was able to tell the front counter that I was being followed. Sure enough, the strange man followed me into the hair salon. Luckily the ladies there whisked me away to a hidden area and confronted the man and he ran away. I bought bear spray and a rape whistle- I thought I was protected from nearly anything now!
By November I noticed that something was wrong, this was no longer asthma. I noticed that sometimes I would be completely breathless going up the stairs. On a trip to Toronto I had to stop on the way back to the hotel from a bakery because I was completely out of breath. This was really unusual because I love walking; I used to be able to walk for hours and hours on trips. I never got tired or short of a breath from walking, nor did I ever have asthma symptoms from it. I realized something was “wrong.” My feeling lead me to the ER where I told the doctor that this was not asthma. There was no way, I haven't had an asthma attack since I was 14. She did not listen and just gave me steroids. What I find the most unusual is that this ER doctor did not even TOUCH me. She didn't ask me to walk and measure my 02 saturation, nothing that would have indicated more asthma.
I tried going to the family doctor where he agreed it wasn’t asthma, but he didn’t know what it was. He tested me for various poisons but everything came back clear. As the month went on I felt worse and worse. By December things had become “scary.” I remember crying and telling my dad that I knew that something was wrong with me. I woke up in the middle of night gasping for air two or three times. At work I could barely leave my desk to go to the bathroom. I could hardly walk up the 5 stairs to get to the office. I could no longer walk to the bus stop because it felt like I was going to black out trying to make it up the hill. I went to the ER again. Luckily this doctor took my symptoms more seriously. I was hooked up to a machine where they noticed I had something called “flipped Ts.” They were concerned about a blood clot in my lungs and sent me right away for x-rays and a CT scan. It came back clear but she noticed inflammation in my lungs. That was on a Thursday. On Monday I went to the hospital to visit the airway clinic, where they were going to discuss asthma treatment with me. (The previous ER doctor from November had made this appointment.) I told them that this wasn’t asthma and someone needed to help me. I did a lung function test and it turned out I was at 43% lung capacity. A medical student then came in and asked me a bunch of questions. A lung specialist then came in and touched a vein in my neck and let out this heavy "you're totally screwed" sigh. He said I might have Pulmonary Hypertension but that they needed to run a few tests to confirm.
My dad and I waited to be admitted to the hospital so they could run more tests on me first thing in the morning. I looked up Pulmonary Hypertension on my phone while in the waiting room and made my dad promise he wouldn’t look it up. All the information I found said I had maybe 3 years to live, and that I would need a lung transplant. I stayed overnight in the hospital on a floor where it was mostly older people who were very very ill. My roommate was someone with lung cancer who just got out of ICU. It was terrible to be around so many gravely ill people. Nurses took me during breakfast to run more tests. No one would tell me what was going on, and my doctor was MIA. It was very frustrating being wheeled from test to test with no information. Around 6:00 pm the doctor came sand said it appears that I have Pulmonary Hypertension and that they would be sending me to a specialists. The news hit me hard. How could this be happening to me? I had a lung/heart disease but I had done everything right to take care of myself. I didn’t smoke or drink. I ate healthy and worked out. It didn’t seem fair. The doctor asked if we had any questions and my dad said yes but we don’t want the answers to any of them right now.
The days, weeks and months following diagnosis are still too scary to relive and share- so I will leave that part blank for now. I hope to be able to look back someday and think "Wow, that was scary but I am so much better now!"
During my “early retirement” or “vacation from hell” I have started The PHight or Flight Project. The months following diagnosis involved me doing a lot of PH research. All I could find was information about how screwed I was. Everything online that I found concluded that I maybe 2-3 years left, and I refused to believe that. Eventually I had found a few stories about people who have had PH for 20 or more years. One story that stood out was one I had found in a chatroom about a man who won a million dollars through the lottery, and then was diagnosed with PH. His doctors told him he had maybe a year left so he spent all of his winnings. He was talking about how he was upset with his doctors for telling him he had a year left over 20 years ago, because that lead him to go through his winnings within several months after diagnosis. I know this sounds like an episode of Lost, but I swear I read it.
What I try to tell myself each day is that my future is unwritten. If you wouldn't trust a psychic with your future, don't put your future completely in the hands of statistics. Anything is possible, I mean look at the odds of having IPAH. (The odds of having IPAH is one in a million.) So who is to say things won't go my way, even if there is only a one in a million chance? I have already proved that I am one in a million!