In October 2014, I was 42 years old, married for close to 15 years, mother of two boys ages 8 and 10. My full time job is hectic and my schedule is always packed. Because of this, and my type-A personality, I am organized, I am efficient and I am a planner. What I don’t like are surprises.
Little did I know that I was about to have the surprise of my life.
I woke up the morning of October 25, 2014 with a strange shooting pain on my right side near the top of my rib cage. It came and went and worsened with a deep breath. I also had a strange pain in my neck. My younger son had crept into my bed in the middle of the night so I figured I slept on my side the wrong way. Having justified the cause, I ignored the pain for most of the day, going about my usual Saturday routine. My husband was at work so I called my sister in law, who is a nurse, to tell her what I was feeling. Because I also had an ache on the right side of my neck, she said it could be a muscle sprain and suggested that a muscle relaxer would help. Being too busy to head to the clinic, I continued to ignore my symptoms, which got progressively worse throughout the day. While I was a little concerned, I reasoned that I would just go to a clinic the next day for some muscle relaxer if the pain doesn’t go away by then.
I went out that night to meet my sister in law for a comedy show near her house about 20 minutes away. I drove myself. While I enjoyed the comedians, I had a hard time laughing because I couldn’t catch my breath. My sister in law was concerned at this point and my symptoms became so bad that I had to leave in the middle of the show, drive home, all the while unable to breathe in deeply. I was becoming worried and promised myself I would go to the clinic in the morning.
Thinking back, it was a miracle I made it home that night.
Around 3am I woke up with horrifying pain on my right side every time I took a breath, even a small one. I was in tears, practically gasping for air, and I couldn’t lay flat. My husband began to panic and suggested we head to the emergency room. But I said no and just had him prop me up with some pillows and give me about 4 Advil to get me through the night. You see, my eight year old son had his championship baseball game the next morning at 9 am and I was determined to be there to cheer him on. I am also a hard core baseball mom who rarely misses a game and there was no way I was missing a championship.
October 26th, I got up early. My husband had to work again so I drove both my boys to the championship baseball game which was super exciting and I was thrilled to be there. I got to cheer my son’s team on to a dramatic victory in the last inning of the game. I took pictures of my son, his teammates, their trophies and basked in the joy of the win before calling my husband from the baseball field to tell him he needed to leave work early to meet me at home because I wasn’t feeling great. I had to head to the clinic now.
After dropping my boys home to my husband, I drove myself to a Stat Health clinic near my house. I shared my symptoms with the front desk and they immediately ushered me in to a room because of my breathing issues. When the doctor came in, I gave him my diagnosis – I confidently explained that I have a muscle sprain, need a muscle relaxer and I’ll be on my way. He listened politely and said that I may be right, but he wanted to ask me some questions first. After discussing my symptoms with me, he sat thoughtfully while jotting some notes into the computer. He then explained that he was a former ER doctor, and given the symptoms I’m having he suspected a pulmonary embolism in my lungs. He recommended that I head to the hospital ER down the road to rule out the possibility. I had never heard of a PE and I asked when he thinks I should go. He said immediately, and handed me a note to give to the ER that indicated a possible PE. His sense of urgency made me nervous and a little scared. It also made me slightly annoyed because I had a full day planned. My older son had a big school project due the next day and my younger son (who had just won the championship) had a birthday party to go to at 5pm. I looked at my watch. It was noon. Ok, if I went now I could make it home for the birthday party. I called my husband to tell him the situation.
As I drove to the hospital, with my doctor’s note in hand, I began to doubt my plan. Did I really have time? Should I just go home and head to my primary doctor tomorrow? It was near my office so I could drop in during my lunch hour. I debated with myself for several minutes. Yes I should go. No it’s not worth the trouble. As I drove up to the hospital, I made the last minute decision to just go in to the ER. The deciding factor? I could not bear to go through another night of that horrifying pain again.
Once in the ER, I handed my doctors note to the front desk. Once again I was whisked past the waiting room and directly into a bed. I was grateful for the note that got me special attention, but still didn’t fully realize the severity of what was going on. The next few hours were a blur of doctors, nurses, blood work, and questions, questions, and more questions. No, I had not been in a long car ride lately. No, I had no pain in my leg. No swelling either. No, I had not been on any international flights.
My husband joined me at the hospital around 1pm. He had reached out to his parents who drove out to our house to stay with the boys so he could be with me. He was now extremely nervous. I wasn’t. I was more annoyed than anything else, becoming more and more convinced that this was a waste of time. I’m young. I’m healthy. I answered no to every question they asked. This was a no brainer. Just give me my blood results, some pain meds (maybe a muscle relaxer) and my discharge papers and I’ll be on my way.
As the blood work results trickled in, everything came back normal. Just as I had expected. But everything was taking forever and time was ticking away. It was now almost 4:30. I told my husband he had to leave me, go home, and drive my son to the party. He refused as he didn’t want to leave my side. But I was adamant that my son (who did not know what was going on with me) not miss his party. My husband finally relented. I convinced him he could drop my son to the party then swing by to pick me up to go home, because really, everything was fine. Every result had come back fine. I had only one more test result waiting to come in, and a CT scan with contrast to rule out blood clots.
The one more test result I was waiting for was the D-Dimer.
In the 30 minutes while my husband was gone, they did the CT scan. As my husband walked back into my room, I was already getting ready to leave assuming I would be getting my discharge papers soon.
The doctor walked in minutes later to share the last of my results. My D-Dimer result, which should be in the range of under 300, was over 1800. And the CT scan showed a massive bi-lateral pulmonary embolism. He explained this meant I had massive multiple blood clots in both my lungs and I had to be admitted into intensive care immediately.
I felt as if I’d been hit by a truck. Looking at my husband’s face, he felt the same. Blood clots? Intensive care? I had to stay here overnight? This was impossible. Not me. Not now. I had a school project my son needed me to help him with. I had a client meeting in two days I needed to prep for. I am young I am healthy this can’t be happening. No way. Then I broke down with the realization yes, this is happening. I started to cry. I was terrified.
Nurses came rushing in to inject me with Lovenox and set me up for admission into the IC unit. I kicked into high efficiency mode. I had some phone calls to make and emails to send. My parents, my sisters, close friends, my boss, my direct reports, the middle school guidance counselor and elementary school teacher. I got an extension on my son’s project and coordinated someone to attend the client meeting for me.
The next several days in the hospital were enlightening. The head doctor on my case told me that the 4 Advil I took the night before probably saved my life that night and if I had waited even a few more hours the outcome of my story would have been very different. Thank God for my last minute decision to turn into the hospital parking lot.
Apparently I had been a ticking time bomb. And extremely lucky. Every single blood clot had traveled through my heart into my lungs. If any of them had been just a little larger they could have blocked an artery and stopped my heart. If any had strayed into my brain, I would have had a stroke. I had no DVT, and my only preexisting condition was a recessive MTHFR mutation gene, which was not enough to cause my massive PE. It was determined that the cause of my PE had been the birth control pill. I was released after 5 days and put on Xarelto for 6 months.
The next year was not easy. I had lost the wind under my sail. I came to realize just how close I was to death and began to develop PTSD-like symptoms, constantly worrying the clots would come back. It was paralyzing at times, causing me to be short of breath from the stress and anxiety, which led me to believe I had clots again. It was a vicious circle. I became depressed and unable to “pick myself up” again. My anxiety shot through the roof and I began taking anti-anxiety medications. After the 6 months on Xarelto, my depression worsened and my doctor put me on anti-depressants. I gained weight. And I had no energy to exercise.
Amazingly on the outside I did not miss a beat. I kept up with my hectic schedule and even managed to be promoted within my role at work. As the years went on I got better. I was able to wean off the anti-depressants, lose the weight I gained, and increased my ability to exercise, even managing to run a 5K race in the summer of 2017.
But there will always be setbacks. A few weeks ago I developed an upper respiratory infection that sent me to the ER again because doctors determined my difficulty breathing was not due to pneumonia or asthma, and given my history with PE, “the tolerance for error is zero”. And so, 4 years post PE, I remain chained to its effect on my life. And if I’m honest with myself it makes me frustrated and angry. I am only 46. If I live as long as I’d like to, that is many years of imprisonment to my PE history. I will never truly be free. But I can continue to forge ahead and be thankful for every day I have. I have always lived by the mantra of “whatever doesn’t kill you only makes you stronger”, but didn’t really understand it’s true meaning until October 2014 when I got the surprise of my life. Did I mention I hate surprises?