A Bit of My Story and a PSA

My Story

A sassy selfie to go with my story.

I would like to take a short pause from my usual plus size fashion posts to tell you a little about my “story” and to give a little education to my readers (or anyone who will listen).  If you are strictly here for the fashion, please feel free to skip this post.  I promise more styling tips and awesome outfit posts will return to the blog right after this.  But, please consider reading my PSA at the bottom of the post.  Thank you.

At the age of twenty-five I had my first research job at a local university.  Everything was going pretty well until I took a very long car ride.  I drove for about 8 hours, only stopping once for gas, and barely getting out of the car.  The following week all of the doctors in my department went to a conference, which meant I was spending my work days in the hospital sitting at my desk, rather than running around the clinic as I usually did.  I remember feeling these cramping sensations in the backs of my thighs which I wrote off to discomfort from sitting long hours in an uncomfortable office chair.  I would get up periodically to try to stretch my legs a little, but really didn’t think much of it.

The following week, I was back to the clinic and hoofing it back and forth between the clinic, hospital, and the train.   Although I was accustomed to that much walking regularly, I noticed feeling more breathless than usual.  I thought to myself, “Man, I’ve got to get in better shape!”   Admittedly my gym routine had fallen by the way side, so I assumed I had become de-conditioned.

All of these things really meant nothing to me.  In retrospect, I can now see the pattern.  But at the time, I was completely uneducated and in the dark.  After all, I was young, why would these small symptoms mean anything?

Within a short period of time I developed a tiny cough and some chest discomfort.  There was no real pain, but something felt “wrong.”  Finally I went to an urgent care center because I didn’t have a primary care physician.  I explained that I had this chest discomfort and a weird cough.  I could tell he was writing me off as some kind of hypochondriac.  He ran no test and took no x-ray.  He simply listened to my lungs and prescribed an expectorant (i.e., Musinex) and said I had a “mucus plug.”  I left knowing he was incorrect, but figured if he wasn’t too concerned, why should I be?

Within the following two weeks my breathing seemed to become more difficult.  I wondered if maybe I had developed asthma.  But after a google search, that diagnosis didn’t quite fit either.  One night, I woke up with sharp pain in my back and side.  I thought it was from sleeping “funny,” the way that you can sometimes get a “kink” in the neck.

Despite the side and back pain, I went to work the next day.  But by the afternoon I was having more pain.  I remember interviewing a Parkinson’s patient about his pain and realized that if I answered the questions myself, my pain would be ranked as very high.  At that point I decided to go back to the urgent care center after work.  But before the work day was over, I was having sharp pains when I would breathe in and I was having trouble standing upright from the intense pain.

Fortunately I was assigned a different doctor at the urgent care, and this time the doctor took me very seriously.  He explained that I needed to go to the emergency room immediately and that he would call so that I would be seen right away.  I called my mom and she met me at the local hospital.  The waiting room was packed full of people.  While I was waiting, they did give me a contrast CAT scan, but then sent me back to the waiting room.  My wait time was around 6 hours.  In that time, my breathing became more and more labored.  I felt like I was suffocating.  Each breath was stabbing pain.  And my breathing sounded more like gasps.  I was literally gasping for air.  I remember looking at my mom with tears in my eyes, saying, “I can’t breathe.  I can’t get air.”  Suddenly a team of people came rushing over with a wheel chair.  They said, “don’t walk!”  They seemed panicked and I was scared.

They rushed me back to a room and immediately put me on oxygen.  I still couldn’t breathe.  I was in so much pain.  Within moments a doctor came in and explained that I had clots in my lungs.  In fact my lungs were full of clots and this was very dangerous.  He said “pulmonary embolism,” something I had never even heard of, but sounded scary to me.

It turns out that I had more than 20 clots in both of my lungs.  Many of my airways had collapsed and parts of my lung tissue had died (infarction).  I was actually suffocating.  They didn’t want me to walk or move because I was actively throwing clots from my legs into my lungs.  I was 25 years old and the hospital doctors weren’t sure if I was going to make it.  Nearly immediately they had me call anyone who I might want to talk to [because I might not live].  I remember calling my dad, but things got fuzzy as they gave me medication for the pain and anxiety.

It is likely that clots (deep vein thrombosis, or “DVTs”) developed in my legs during my long car ride.  It is actually far more common than people realize to develop clots in the legs during travel, especially long flights.  Over time the clots broke into pieces and traveled into my lungs where they were lodged into my smaller veins, blocking blood and oxygen from getting to my lung tissue.  The clots then began to grow larger where they blocked more and more of my lung tissue, which began to die from lack of oxygen.  Later, my pulmonary specialist said that he had never seen anyone survive so many clots and that much damage.  So in that regard, I consider myself very lucky.

PE SurvivorBut, unfortunately, I have a genetic defect that causes my blood to clot.  And despite being on anticoagulation therapy for life, I still have had subsequent clots in my arms, legs, and lungs.  Just this past year I had another pulmonary embolism and a clot in my arm.  My story is actually so much longer, but I wanted to share with you the beginning of it because I have learned that blood clots are deadly and common.  Much more common that you might think.

Statistically, about 300,000 people in the U.S. die from blood clots annually, which is more the total number of people who lose their lives each year to AIDS, breast cancer, and motor vehicle crashes combined. (Source)  And it can happen to anyone.  This is an illness that can strike healthy people.  For example, famous athlete Serena Williams survived a blood clot in 2011, which she describes as being “on her deathbed.”

My PSA:  Please Know the Symptoms

If there is anything to take away from my long story, it is to please take a moment to familiarize yourself with the symptoms of a pulmonary embolism (blood clot in the lungs) and deep vein thrombosis (blood clot in a major vein).  It just may save your life or a loved one’s life.  Over 900,000 people in the U.S. develop a dangerous clot each year.

Common symptoms of a pulmonary embolism include:
  • labored breathing, sometimes accompanied by chest pain
  • rapid pulse
  • a cough that may produce sputum
  • low-grade fever
  • fluid build-up in the lungs
Less common symptoms include:
  • coughing up blood
  • pain caused by movement or breathing
  • leg swelling
  • bluish skin
  • fainting
  • swollen neck veins

Common symptoms of a deep vein thrombosis (DVT) include:

  • Swelling, usually in one leg (or arm)
  • Leg pain or tenderness often described as a cramp or Charley horse
  • Reddish or bluish skin discoloration
  • Leg (or arm) warm to touch

If you suspect you or someone might have a pulmonary embolism, immediately call 911.

Below is a list of some of the most common risk factors for blood clots.

Know your risk:

  • Hospitalization for illness or surgery
  • Major surgery, particularly of the pelvis, abdomen, hip, knee
  • Severe trauma, such as a car accident
  • Injury to a vein that may have been caused by a broken bone or severe muscle injury
  • Hip or knee replacement surgery
  • Cancer and cancer treatments
  • Use of birth control methods that contain estrogen, such as the pill, patch or ring
  • Pregnancy, which includes the six weeks after the baby is born
  • The use of hormone therapy, which contains estrogen
  • A family history of blood clots
  • Obesity
  • Confinement to bed
  • Sitting too long, especially with legs crossed
  • Long distance travel/long flights

I hope that by sharing a little of my story that you can see how easy it is overlook the symptoms of such a deadly illness.  I was so fortunate to survive that first time considering I had no knowledge.  Had I known the warning signs, I would have gotten help so much sooner.  It might have prevented some of the permanent damage I have to live with.

I still have to be vigilant about the warning signs because I still develop pulmonary embolisms despite prevention strategies, devices, and medications.  Basically I’m my hematologist’s never ending quandary.  😉

For more information about clots or to get involved with prevention and education, go to stoptheclot.org.

32 thoughts on “A Bit of My Story and a PSA

  1. Thank you for sharing this important information. We all need to be more cognizant of our own bodies and when things are not right.

  2. Dear Alexa, thank you so much for your story! You are an awesome survivor! I especially appreciate the list of warning signs.
    Sincerely,
    Jen

  3. Thank you for sharing your story. I used to travel a lot for business and sit often for long periods of time. I often worry about blood clots. Fortunately, I have never had any. I know that I need to move more, but I have gotten into a very, very bad habit. I definitely will try to do better.

  4. First, thank you for bringing this to light… so many doctors fluff off women when we come in to their office with a myriad of symptoms… but we know when things aren’t right. I am so glad you found a doc who took you seriously before it was too late. I imagine you do quite a bit of sitting while working on your blog and I would set a timer on my phone just to remind me to get up and move… keep up the good work with your blog, I love it!

  5. Thank you, Alexa, and let me join the others who are grateful you are OK. Keep taking care of yourself!
    I’m also really grateful for the PSA. We lost my dear mom-in-law a few years ago to a blood clot, a few days after a family get together. I remember noticing that her feet and ankles were swollen and thinking that seemed strange, but it was August and I chalked it up to the heat. Now I realize it could have been a warning sign if I’d only known to head it.

  6. Well my dear, I’m so glad you shared . That’s quite a lot for you, praying for you always! Sounds so scary and painful. Many blessings, and may you continue your womderful blog because I think you are truly talented!! Anything I can do, just ask.

  7. Thank you for sharing this, and I’m so glad you’re here to tell the story! I’m going to make an effort to stop and walk around more on long car trips and also stand or walk on planes.

  8. Thank you so much for sharing this. I had no idea how common blood clots are. Our God is amazing! You are in my prayers and thoughts.

  9. My story is much the same. I had a rapid pulse, a slight cough and just wasn’t feeling well. I passed it off as allergies. It was a bilateral blood clot that was, in the ER doctor’s words “HUGE!”
    I had put off going to the doctor for various reasons but fainted in my home. Thankfully my husband happened to be here at the time and called 911. I was in surgery within five hours. I was told as they prepped me for surgery that my chance of survival was 75%. I am older tan you and do not have a blood clotting issue but yes I am overweight (have since lost about 50 pounds) and I was more sedentary.
    I too have shared my medical journey with others on my blog and am happy to read that you survived and are willing to make your blog a forum for this health concern. Thank you for sharing your story!

  10. Thank you Alexa! As a nurse I cannot tell you how many times I seen or heard similar stories from young people. Everyone assumes this is an old persons problem, but it is not! I appreciate your transparency and willingness to share in the interest of helping others.

    1. Thank you, Marsha. It is not talked about enough, in my opinion. I was so clueless back then. I would have gone for a second opinion had I know the potential danger of my symptoms. So, I try to spread the word!

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