I belong to a group on Facebook that provides support for people who have been diagnosed with Pulmonary Embolisms and DVT. I hear so many different stories, different struggles, many of which I can relate to. But I really wanted to share the experiences that these people like me were having, so I posed an open-ended question: What do you wish more people knew about your condition? I got over 60 responses and the question sparked several conversations within the thread. I condensed these ideas the best I could, and threw in some of my own experiences. Naturally, this list doesn’t speak for every individual, but I think it’s a good starting point for beginning to understand what we’re going through and how the average person only sees the tip of the iceberg. According to my poll results, here are 15 things that people with pulmonary embolisms wish you knew:
1. This condition is serious. “Sudden death is the first symptom in about one-quarter (25%) of people who have a PE” [Source]. Up to 100,000 Americans die each year from PE/DVT. Die. As in, they aren’t with us anymore. This condition is not just serious, it is deadly. When we say we are lucky to be alive, we mean it!
2. This didn’t happen to us because we are lazy. Common misconception. We did not develop this illness from poor diet or lack of exercise. A pulmonary embolism can happen to anyone, young, old, sedentary, or athletic. In fact, young and healthy people often get misdiagnosed by their doctors, which could be a deadly mistake! PE can manifest for a variety of reasons: a long plane ride, birth control pills, genetic factors, or recent surgery being most common. It really can happen to anyone, which is why we champion our cause and try to spread awareness to our friends and family so they can avoid it!
3. Chronic fatigue and pain are symptoms and they are real. When a clot forms in the leg or lungs, it often causes swelling and inflammation, which can be very painful. Some people liken it to a stabbing sensation in their backs, others describe a heavy weight compressing their chests, making it difficult to breathe. An embolus in the lungs can prevent oxygen from reaching the bloodstream, causing lightheadedness, dizziness, and fatigue. During the time that the clot takes up residence in the lungs, these symptoms are chronic. We can go to sleep and still wake up exhausted because our tissues and organs aren’t getting the oxygen they need.
4. Just because we look ok does not mean we feel ok. With PE, most of the damage occurs inside the body. We may look the same on the outside, but our heart and lungs have experienced a trauma. The rest of our bodies have been affected as well because of low oxygen levels in the bloodstream, so our organs are literally starving for air.
5. Anxiety and depression are part of the territory. After PE, life is full of requirements and restrictions to prevent another occurrence. We are medicated with daily blood thinners either orally or by injection. Some of these medications require us to drastically change our diet to ensure they continue to be effective. Women must stop using hormonal medications and birth control, which may have been managing other conditions. The threat of another PE is always present in the back of our minds. We were lucky this time, but what about next time, if there is a next time? Add to that depression caused by not being able to participate in our favorite activities anymore as well as being criticized by friends, family, bosses, and doctors alike for not getting well “soon enough.” All of the added stress is enough to make anyone a little crazy!
6. Recovery can take years. A pulmonary embolism does not conform to anyone else’s timeline. Not yours, not your doctor’s, not your boss’s. If caught very early, some people may recover in a matter of months. But, more often than not, the recovery process can last for years or even a lifetime. I’m nearly two years out from my PE diagnosis and I still have chest pains and my blood oxygen saturation still drops quite a bit when I run. Some people still have symptoms 10 years after their diagnosis! It really is different for everyone, and often depends on the severity of the condition, how long it took to diagnose, and what systems were affected.
7. For some of us, our bodies are never the same afterward. Some people are fortunate enough to make a full recovery, and how wonderful that is! But others will experience extensive damage and scarring, and still others will be left with something in between. We may be able to eventually work up to living a normal life again, but there will still be limitations to what we can do.
8. Unless you’ve gone through it, you probably don’t understand how exhausting it is (doctors included). Because PE presents a little differently in everyone, it seems like even doctors don’t always have a firm grasp of what we’re experiencing. Some are surprised when we tell them that 8 months later, we still can’t breathe well. Many will deny time off from work after discharge once our medication levels are “therapeutic.” For every caring physician out there who strives to understand what their patient is going through, there are at least ten more who would prefer to sentence us to a textbook recovery and insist that the lingering symptoms are all in our heads. No, doc. We are not crazy!
9. We want nothing more than to go back to the way life was pre-PE! Seriously. If we knew then what we know now, we would not take anything for granted. We would go to the gym and do hours and hours of cardio on the treadmill, just because we knew we could! (Alright, that might be a stretch…) Life really was so much easier back then.
10. Our symptoms are intermittent – some days we will be fine and other days are very difficult. This is a rather interesting facet of the PE. It is very easy to identify when we are having a bad day. We can’t breathe, our chest feels like an elephant is sitting on it, our legs are sore and swelling, and we are just beyond drained. But then we’ll have an odd day that actually feels pretty good! Maybe even several odd days of feeling rested, productive, and happy to make plans and have fun! It’s such an exhilarating thing to feel normal again, like you’ve been cured. But then we push it a little too far, make too many plans, stay out too late, become too active… and boom. We’re laid up in bed for a week. It happens.
11. We aren’t just trying to get out of work. This one drives us crazy. No, we’re not just trying to get free vacation days. We’re sick. We’re trying to recover so that we can get back to something that resembles a normal life. We’re allowed to be proud of ourselves when we have good days, and we are allowed to rest when we have bad days. We are allowed to look after our health first. Please do not make us feel guilty for that.
12. Walking up stairs makes us sound like we’re dying, pretty much always. Take me up more than two flights of stairs and you’ll think we just climbed to the top of Everest. Seriously.
13. Some of us are in constant fear for our jobs because of interference from our condition. On our normal days, most of us are still able to work. But what happens when we have a string of bad days? What happens if we can’t obtain or even exhaust medical leave because of complications? What if the job we had for 20 years now requires physical labor that we just can’t do anymore? This is a complicated and frightening issue for many PE sufferers.
14. The side effects of our medication can be brutal as well. Headache, stomach pain, heartburn, vomiting, diarrhea, bruising, joint pain, swelling, fever, or severe bleeding that could result in death… I’m sure you’ve heard all the horrific side effects in pretty much every pharmaceutical commercial. Add them to a sick person and you have one very unhappy camper!
15. How much we need someone to listen to us. Have you ever told your doctor about some symptoms you were having and they didn’t believe you or told you it was nothing? We have. Have you ever tried to explain to someone that you just don’t have the energy to go out tonight like you planned and they thought you were ditching them to do something else? We have. Have you ever just wanted to cry because nobody really understood what was happening to you? We have. What we really want more than anything is for the people around us to listen. To understand what’s really going on under the surface and to support us when we feel like we really can’t make it another day. We encounter so many people who downplay what we’ve been through, who act like it’s no big deal. It is a big deal and we survived it! Celebrate that with us! And reach out when we need a hand or a listening ear. In our world, it’s the best thing you could possibly do for us!
I hope that maybe I’ve provided a little more insight into what quite literally tens of thousands of Americans (and even more people throughout the world!) experience every year. These things can sometimes be difficult to express with friends or family, but feel free to share this article with your loved ones. If you have more to add from your own experience, leave a comment!