No One Should Have to Wait Five Months for a Diagnosis: Carly’s Story

No One Should Have to Wait Five Months for a Diagnosis: Carly’s Story

Up until my senior year of high school, I hardly had a worry in the world. Just like many other seventeen year olds, I was looking forward to my spring break, summer vacation, and beginning college. In April of 2012, my life took a turn for the worst. I began missing school because of unknown chest pain and difficulty breathing. I had always been a healthy person so I figured my discomfort would eventually subside.

Unfortunately my pain only got worse and I ended up in the Emergency Room a month later in May.

I went through an EKG test, an X-ray and a series of blood tests but the doctors weren’t able to find any abnormalities. They suggested I see a gastroenterologist to see if I had any food allergies or acid reflux because of my difficulty breathing.

It took around two months for me to see a gastroenterologist and go through a series of tests, including a scope of my stomach. When nothing was found, the doctor suggested it might be stress or anxiety and that I should go to my primary care physician to get another look. I knew I didn’t have any anxiety and I became very discouraged that I would never find out what was wrong with me. I figured I was going to be okay and that maybe my mind was playing tricks on me. I decided to go back to my normal life and hope for the best.

My pain and discomfort remained the same until an awful day in August. I woke up with extreme pain in my left lung that traveled to my back. I couldn’t move. I was stranded in my bed screaming and my heart was beating out of my chest. It was the most excruciating pain and I had never been so scared in my life. The pain subsided a bit and I talked to my primary care physician and she sent me to a pulmonary specialist. The pulmonary specialist examined me and suggested that I try taking a pain killer for a few days because it could be muscular. She told me to call her if the pain did not subside and she would set up a CT scan (an x-ray that can take detailed picture of the lungs to help find blood clots. A few days passed and the pain was still there so I underwent the CT scan.

Right after the scan, I got a phone call that changed my life. I was told I had a pulmonary embolism (a lung clot, also called a PE) in my left lung and that I needed to come to the hospital immediately. I was tested for blood clotting told I didn’t have any blood clotting disorders, but I would need to give myself Lovenox injections twice a day and take warfarin once a day for four months. No one in my family has ever had a blood clot or clotting disorder. They predicted that my clot was caused by birth control I was on for menstrual problems.

I was told that for those five months that I went undiagnosed, I could have had a stroke or dropped dead at any time. Hearing those words changed my life, I was put through a lot of emotional stress but it has made me a stronger person today. I do not take anything for granted and I never go a day without saying I love you to the people that mean so much to me. I know I am so lucky to be alive today. I thank God everyday for that. I am so thankful for my friends and family that stood by my side and supported me through thick and thin.

Today, my lungs are blood clot free but I will have to take preventative measures for the rest of my life. When I travel I will have to take blood thinners, when I decide to become pregnant one day I will have to go back on Lovenox injections, and I have a 30% chance of pulmonary embolism recurrence. I want to use this unfortunate experience to educate women of all ages to be aware of what fatal side effects birth control can have on their body and to watch for symptoms. I also want to educate all of society about pulmonary embolisms and the symptoms that go along with it.  No one should have to wait five months for a diagnosis like I had to. My advice to everyone is to listen to your body when you know something is wrong. Illnesses like pulmonary embolisms are fatal and going without answers cannot be a choice.

Take Home Messages:

  • Pulmonary Embolism are sometimes misdiagnosed as something else, as in this case, acid reflux and anxiety
  • Hormonal birth control increases your risk of a blood clot
  • Once you have a PE, you have a 30% chance of having another one
  • If you’ve had a blood clot, you should do what you can to prevent getting another one
  • If you are on hormonal birth control, you need to know the symptoms of blood clots so you can get help as soon as possible
  • Listen to your body when you know something is wrong.  Get answers to your questions about what is wrong
  • Surviving a blood clot is a life-changing experience
  • Do what you can to increase awareness of blood clots so others will know the symptoms
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