Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I was just diagnosed with my first PE on September 27, 2016. I was at work, and out of nowhere, I experienced severe pain on the righthand flank side of my back. It was incredibly painful to breath. Thinking it was a muscle strain, I tried to stretch and move around some. As the pain only got worse, a colleague thought that it was best to call 911. When the EMT spoke with me, she said she thought it was just a muscle strain, but that they could take me in the ambulance to the hospital if I felt I needed to go. I felt an overwhelming feeling that it was best to get it checked out. If it was simply a muscle strain, I would pay the co-pay and learn to stretch better before and after excercising. Only it didn't turn out to be that simple. Within a few hours of having various tests completed at the hospital, I was diagnosed with 3 small PEs, with one of them obstructing one of the heart valves. I was admitted and the docs started me on Heprin. All of this was going on while I was thinking of my beloved mother, who passed in 2011 from a pulmonary embolism. However, my mother also had a significant autoimmune disease and a fall that resulted in a pelvic fracture. I completed the treatment and was started on Xerelto, saw the hemotologist that treated my mother, saw my primary care doc and remained at home for a week to begin to regain my strength.
Throughout this entire process, however, I must say that I have shed tears of fear of the unknown regarding the disorder, but I was also disappointed by some of the reactions of some friends and family with whom I care about deeply. Some people were very helpful, as always, and others responded as if I had just told them I was recovering from a bad cold. I'm not sure they fully understood the potential implications of what could have resulted from a PE. My best friend texted a few times, but never called. Then there were others who were very supportive. My place of work touched base with me once via text message and once via phone. This was in a 2 week period of being out of work. My husband, who has been very loving through this process, tells me that I am expecting too much of other people, but I tend to disagree. I wasn't expecting flowers and balloons, but a simple card or phone call would have meant a lot. Then there are some people who came out of nowhere and really touched my heart with their kindness.
Just wondering, did anyone experience any similar circumstances when they were hospitalized and during the recovery process. I'm returning to work on Monday and I'm not sure if anyone has any advice as to how to face coworkers with whom I carry some hurt feelings. Any help with this would be much appreciated. I'm so glad that I found this group. From reading some of the postings, everyone seems to be very supportive of one another. I look forward to reading new posts and any perspective you can provide given the feelings I described above.
Thanks for taking the time to read my story.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
It's really hard to fully understand what's going on unless you've been there or you know someone who has been there. I was always pleasantly surprised when people were familiar with clots and how dangerous they were, but I assumed that most people just didn't know.
It's possible your co-workers kept thinking you'd be back the next day, or the next day, or the next day. They may not have been sure and kept assuming they'd see you when you got back, not realizing how long you'd be out or how hard it has been for you. I really would try to cut them some slack, if you can. And, if people ask, try to be honest about what happened. I always feel good if I can educate someone about clots, since it could save their life someday--or the life of someone they know.
My parents have been very blase throughout my clotting history (3x now) and it has been frustrating, so I know where you're coming from. Other people have been pleasantly surprising. I guess what I'm saying is that this isn't a sign that no one appreciates you or worries about you--it may just be that they don't know what has been going on. I'd try not to hold it against them if you can, which is sometimes easier said than done.
On friends and colleagues being present and supportive, honestly it's just human nature. Some people are good in a crisis, some want to be and don't know what to do, some think they are being most helpful by not bothering you, some are afraid of what you're going through, some are self-involved and some just aren't reliable in that way. I would say hold the ones that came through to you precious in your life; for people close to you who failed you, perhaps at an appropriate time and place mention what would have been welcome and helpful; and for people less close to you, I would just accept that people have different strengths and let it go. If you are not getting what you need from someone who is close to you, ask for it. Often they just don't know how to help you best.
Our worlds get super small after a health crisis and we tend to think every one is directly affected by our situation or thinking about it all the time. They are not. That seems impossible because we feel so altered by the experience, and so it's hard to get how people seem so unaffected. But the reality is, while you were out of commission, their day to day lives kept going, with.their kids, their jobs, their stresses, their problems etc.
So, don't take it personally, especially with coworkers. Hell one of my brothers didn't come to see me while I was in the hospital for 7 days. He told my other brother he doesn't like hospitals. My other brother, who is a paramedic and understood how critical I was, was pissed at him. I said don't be. I mean, here I was lucky to be alive. In the big scheme of things, who cares who calls, who comes, etc.