The emotional toll of DVT & PE: what the medical community does not understand

It’s the day after you have returned from a family vacation. Your back is sore and you chalk it up to sitting in a cramped airplane seat for 6 hours. After some Tylenol, you continue with your daily activities.

Over the next couple days, the back pain worsens, and you notice some left leg swelling. Did you pull a muscle? You decide that if your symptoms don’t improve with ice and leg elevation then you will see your PCP. That night, you wake up extremely short of breath and feel intense chest pain. Are you having a heart attack? You know something is dreadfully wrong and you go to the ER.

In the ER, you wait for hours to be seen. After numerous blood tests, an ultrasound of your leg, and CT scan of your chest, the ER doctor tells you that you have two large blood clots — one in your leg and another in your lungs. The clot in your leg is called a deep vein thrombosis (DVT) and a piece of it broke off and traveled to your lungs and caused a pulmonary embolism (PE).

You get admitted and over the next few days, intravenous blood thinners are running thru your arm. Lots of doctors whose names you can’t keep track of walk in and out and tell you that the DVT in your leg was probably from sitting too long in the airplane but they can’t tell you much more than that. You are discharged a few days later with pain medication, oral blood thinners, and a cane to assist with walking and are told to follow up with your PCP. There is no educational material or resources about your condition provided to you.

Over the next few weeks, you feel like you have been hit by a truck. Your leg is extremely painful and you can barely walk, even with the cane. Your breathing is difficult but improving slowly. Your PCP provides you with a script for compression stockings and refers you to a hematologist. After ordering more blood tests, the hematologist says you do not have a genetic clotting disorder and that 6 months of blood thinners is all you need.

In your spare time, you are obsessively searching the internet for answers and are overwhelmed by the mountain of articles on DVT and PE. Some have conflicting information and you are not sure which articles to trust. You turn to social media groups for answers, only to find that the people with the worst case scenarios are the ones that post and the more you read their posts, the more scared you feel. You are left wondering if life will ever be the same again.

Fast forward 3 years and it’s been a long road to recovery. Your breathing is almost normal but you still get short of breath at times with activity. The leg swelling has improved but your leg is still very painful and you can no longer do the activities you used to do. This has taken a great physical and emotional toll on you. You feel that neither the ER doctor nor your PCP told you how a DVT would change your life. You had to resign from the job you love for a desk job as you cannot stand for long periods of time. In fact, you are wondering if you should go on disability as sitting for long hours is also difficult. You have gained weight since you cannot exercise. You have fallen into depression, and you are not the jovial and fun loving person that you used to be. This has negatively affected your marriage and other relationships.

Since your PE, you are very anxious and often lie awake at night wondering if you will die in your sleep. You are in your mid-40s and you have a spouse and kids. What will happen to them? If it’s not the anxiety that keeps you awake, it’s the post traumatic stress disorder (PTSD) that you have developed from this whole ordeal. Every time your leg hurts more than a 5 out of 10, you run to the ER thinking you have a new DVT and every time the US comes back negative. How can that be? The local ER has labeled you as a drug seeker and you just want to scream and say “That is not me! I was not like this 3 yrs ago. Can’t you understand that?”

The above scenario is extremely common and an overlooked aspect of the emotional toll that venous thromboembolism (VTE), which includes DVT and PE, has on patients. As a medical community, we MUST do a better job of talking to patients about the risk factors and signs/symptoms of DVT/PE. We need to educate patients about post thrombotic syndrome (PTS) which occurs in over 50% of those with extensive DVT. We must not discount the chronic pain with no outward signs of DVT that many experience post DVT as it may be scar tissue inside the veins restricting blood flow that is causing the pain. Providing a referral and learning about specialized centers that offer procedures such as deep venous recanalization and stenting can be life changing for our patients, and we need to become familiar with these programs and their long term outcomes. We need to listen to our patients about what their bodies are telling them. Even if we cannot help our patients who are often otherwise healthy and in the prime of their lives, we must show compassion towards them and be cognizant of the emotional toll that this condition brings on them.

VTE affects millions of people each year and yet the general public knows little about it until they are affected by it. All too often, it is not the acute DVT or PE that is the most damaging but the aftermath that is the toughest to deal with. We as a medical community need to make DVT and PE a household name so that we can diagnose and intervene early, prevent and/or minimize long term complications and most importantly, save lives.

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6 Comments

  1. Richard Cooper

    Thank You ♥️

    Reply
    • Sarah

      This article hit close to home. I so feel this way. I feel that there really isn’t anyone to talk to about this that can give me solid advice.

      Reply
  2. A Hernandez

    This article sounds like it was written about me except I did not have a PE. It’s been 4 years since my extensive DVT and May-Thurner diagnosis. I struggle to walk any distance, stand for any period of time or sit at work.
    I wish there was something that would bring my damaged veins in my leg back to normal.
    Thank you for your efforts to make doctors more aware of what we’re going through.

    Reply
  3. DVT Runner

    I’ve never felt so “seen” by any other column that I have read on the topic of DVT & chronic Post Thrombotic Syndrome. Got emotional reading this. Thank you for posting.

    I struggled mightily with the toll of PTS – the mental and emotional trauma associated with the condition becoming progressively harder to cope with than even the physical. So much of what you have described – the depression, the loss of hobbies/passions, the strain it put on relationships, the fear and anxiety surrounding sleeping, doom-scrolling through different social media groups or WebMD and losing hope – this describes my experience so precisely, it’s almost spooky.

    Discovering recanalization as a treatment option for my condition changed the course of my life. Successful treatment of my physical symptoms was a nice outcome – I’ll never forget the thrill of being able to run around in the yard with my nephew and niece again. But slowly regaining the optimism, confidence, and joie-de-vivre that I’d lost to PTS was an honest miracle.

    I sincerely hope this article finds others like myself who are suffering similarly. For many, there is very real chance that your case is treatable. I was led to believe, by my PCP and via other consultations, that PTS was not a treatable condition. This seems to be “conventional wisdom” on the topic for PCPs and even some specialists, but this is not a universally held conclusion. I turned out to be a good candidate for recanalization and my outcome has been excellent.

    For some others, treatment options may still be limited for you (at least for the moment). If this applies to you, and you are suffering from the “DVT and PE PTSD” described above, please know that you are not alone. There is a community of people who understand, and are out here, and happy to connect with you and support you. Please feel free to reach me at runnerswithdvt@gmail.com if you’d ever like to discuss with someone who has been there before.

    Reply
  4. Margaret Larkin Silva

    Wow! This is such a spot on accounting of what my daughter has gone through starting at 17!

    Reply
  5. Will

    This is so true, the emotional aftermath is much more debilitating than the event. Well in my case it was.

    Reply

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