Carly_MorrellUp 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

Author: admin

4 Responses to "Carly Morrell’s Blood Clot Story"

  1. Patrick Posted on February 23, 2014 at 2:51 am

    You are a very courageous young woman.
    I wish you all the best in life.
    You have made me stronger.
    I’ve just been diagnosed with A-Fib and have to be aware of bloodclots.
    Stay strong – be smart – and enjoy your life.

    Patrick

  2. Patti Posted on March 16, 2014 at 11:48 am

    I was diagnosed with a clot in my abdomen nearly a week ago and now give myself shots twice a day as well as take Coumadin. I’m in my early 40s and luckily have completed my childbearing. I can’t imagine being so young and having to go through what you are.

    One thing that scares me is that my eldest daughter is taking birth control. There is a blood test that can be taken to verify whether a person has a genetic clotting disorder and we are going to have our daughter tested to make sure the birth control is safe for her.

    Best of luck and prayers to you.

  3. Ashley Posted on March 18, 2014 at 9:23 pm

    Patti, speaking from experience, have your daughter explore other options. It isn’t worth the risk to me.

  4. Nichol Posted on November 7, 2014 at 7:05 pm

    Hi Carley! I’m so happy to hear you survived your clot and I commend your positive attitude and determination to help make people aware of this very dangerous disorder.

    One question: When you say you went misdiagnosed for 5 months are you speaking of the doctors not finding your clot? Or that you in fact have a blood clotting disorder that you were tested for and either the lab tested incorrectly or the doctor ordered the test incorrectly which caused a false negative result?

    The reason for my question is on the stoptheclot website I specifically searched for “misdiagnosed” on this site as I was misdiagnosed for over 12 years.

    I had my first clot at 23 in 2000 – but they blamed it on being a few weeks after child birth. Was tested and told I had a slightly lower level of Protein S but because testing was done after being on Coumadin and Heparin that the result was typical so I would need to be tested after being off the medication for 6 months. That test came back within normal range and I was told it was just a “freak thing” and not to worry..

    I had my second clot a few weeks after breaking my leg in 2009 and was again tested after being on anti-coagulation therapy and told I would need to wait 6 months to a year after to be tested again to be sure of a true diagnosis as this test again showed a slight Protein S Deficiency (which can be a result of being on blood thinners). The final test showed a slight decline in Protein S but “nothing to worry about” as it was still close to normal range so the doctor decided to take me off Coumadin and Lovenox – especially since I’m “Coumadin Resistant” and 50 mg of Coumadin and 60 mcg of Lovenox 2x daily would only elevate my INR to 1.5 – 1.8 (on a good day).

    I want to point out that each time I had a clot I saw both heads of the Hematology/Oncology Department at Boston Hospital and Rhode Island Hospital. Finally in 2012 I saw another Hematologist after moving back to Massachusetts from Rhode Island and was diagnosed with Protein S Type II. I guess the biggest problem with having that type of rare blood clotting disorder is that if the doctor orders the test as: Total, Free & Clear and the Free & Clear are tested together (as most labs do) it will only show if you have Protein S Type I or III. Sounds like an easy fix right? Not so much…

    Protein S Type I: Shows a decreased Total Protein S activity, decreased Total Protein S, and decreased Free Protein S – a “quantity issue or quantitative” as they say.
    Protein S Type III: Shows a decreased Protein S Activity, decreased Free activity, and normal Total activity – a “quantity issue or quantitative issue”.

    However…….

    Protein S Type II: Shows a decrease in Protein S Activity, Normal Free protein levels, and Normal Total protein levels making it a “quality” issue or a “qualitative issue” not a “quantity” issue in regards to Protein S.

    It is easy to be misdiagnosed as there seems to be a lack of communication or understanding of what is actually being tested or how it is being tested when a lab code is typed in between the doctors, labs, and phlebotomists (not that any one departments fault per se).

    From what my doctor explained to me, it is very important that the doctor and more so the lab does each test separately (although I have had many arguments with doctors, labs, phlebotomists, lab managers, etc. saying that there are 3 parts to the test and the test is being order/tested correctly…BUT…. if the Free & Clear part of the test is tested together (as they typically are) it will look like all the Protein S workers needed for the job in your blood are all are at work and doing there job just fine however with Protein S Type II – all of the Protein S workers needed for the job are all there but they’re “out to lunch” or permanently “on break” per se.

    I know Protein S Type II is rare – my understanding, and I’m in no way a doctor is that about 1 in 20,000 people have the disorder. That being said I can’t imagine I’m the only person this has happened to. It took a lot of work and persistent (arguing and making not so many friends at a few doctors offices/labs) to find out that all of my other specialists (including Rhode Island Hospitals Cancer Center Lab) had my clots noted incorrectly as “just coincidences”.

    I can’t imagine how many deaths have occurred as a result of this “miscommunication”. My father died at 32 before ever being diagnosed and my blood clot condition is a result of his genetics not my mother’s as my new doctor had her tested. But I’m still not 100% sure as although I have faith in my new doctors ordering/coding lab work for this specific disorder, and it was done in the same lab, the phlebotomist could’ve taken it wrong, a lab tech could’ve not separated it correctly or tested the free/clear together, I’m just not sure and that is unsettling.

    Then there’s my worry for my children, their children one day, and so on…. My 14 year old son was tested in the same lab right down the hall from my Hematologist (where he sends all of his patients, not that they can’t decide to go somewhere else) and their results show he has no predisposition to the disorder I have. BUT…..I fought with his doctor, their lab, another 3 labs, fights with mangers, etc. and calling my Hematologist to email/fax my son’s doctor how the test “HAS TO BE DONE” and then I decided to drive the 45 minutes to the lab down the hall from him in hopes of him being correctly tested. My 20 year old daughter refuses the test which makes my heart ache nervously every day as not only does she smoke/she also takes birth control pills, ugh.

    What I’m sure of is that there really needs to be more strict regulations on a governmental level to ensure there is clear communication between doctors and labs. Doctors go to school for approx. 13 years, and I’m not knocking Phlebotomist but I think their training is approx. 6 weeks – and they do the job in which they were trained to do but there seems to be someone missing to ensure that the lab understands exactly what the doctor needs tested and how (if that doctor even knows as 2 of mine did not).

    I know in speaking with a few experts in the area that U. Mass Dartmouth in Massachusetts is one of the first colleges to offer a program for a Doctoral Program for a doctor/lab liaison (a doctor specializing in correctly ordering lab tests to work at hospitals to try and avoid these types of situations). However, it is a very new program and the experts I’ve been in contact with (through U.M. Dartmouth) have been trying to change legislation on this exact issue since the late 60’s/early 70’s so this is no easy feat at best.

    My long, drawn out point is I hope you were correctly tested. I hope everyone that struggles with Blood Clots/DVT’s/PE’s has been correctly tested and if not, I hope they are able to be correctly tested as soon as possible.

    I’m one of the lucky ones so far! However, my current doctor would have never taken me off anticoagulation therapy if I was correctly diagnosed but he feels it’s a greater risk to start the process from scratch at this point so I’m taking 2 aspirin a day for now (finger’s crossed :0)

    I wish you a long prosperous, and blood clot free life my dear!

    God Bless,

    Nichol

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