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 diagnosed with a PE about two weeks ago. It was a small clot in one of the arteries in my lower right lung. Was having chest pain when breathing in deep with an ache in my upper right back. At first I assumed these were just symptoms of heartburn and would go away. After two days the symptoms got worse and I knew there was something wrong. Went to the doctor and had a D-dimer of 1524. Was sent to get a CT and the doctor found the blood clot. I was in the hospital for two days on Heparin and sent home with 5mg of Warfarin. Everything happened very suddenly. There wasn't much explanation and it was assumed that my clot resulted from my use of bcp pills. I feel like none of my questions were answered and I've been swept under the rug by my doctors because I'm young (25) and my clot is small.
My mother died 20 years ago from multiple massive PEs after a leg injury. As a result of that and my current diagnosis I struggle with constant fear of getting another clot. So much so that I can't even sit and watch a tv show without having fear of getting DVT in my legs. I even have trouble sleeping and haven't slept well since leaving the hospital. I'm back at work and I feel like my body is slowly healing itself. I get pain from time to time and I have my good days and bad days. But mentally I'm not doing okay.
Considering seeing a Hematologist that can answer my questions and put my mind slightly at ease.
My mother died 20 years ago from multiple massive PEs after a leg injury. As a result of that and my current diagnosis I struggle with constant fear of getting another clot. So much so that I can't even sit and watch a tv show without having fear of getting DVT in my legs. I even have trouble sleeping and haven't slept well since leaving the hospital. I'm back at work and I feel like my body is slowly healing itself. I get pain from time to time and I have my good days and bad days. But mentally I'm not doing okay.
Considering seeing a Hematologist that can answer my questions and put my mind slightly at ease.
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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.
Sorry about your mom.
It's understandable to be fearful, especially given your family history. I know many of us have struggled emotionally and mentally with having had a PE. It's a big part of the recovery, actually, trying to sort that out.
One thing to note is that when we're diagnosed, the main focus of the docs in the hospital is the immediate need to get you stable and safe. They don't see a lot of patients after sending them home, so they kind of don't always know what to tell them to expect or even if there is anything to expect. I think sometimes it's better to address the questions with another doctor, like your GP, or a hematologist, which may not be a bad idea considering you're family history. I don't think it's necessary to have a hematologist treat you or manage your warfarin, but I can say the couple of times I saw my hematologist, it did help me overall just feel more comfortable with what happened.
I also went to therapy for a little but after my PE, just for like 6-8 weeks, something like that. I started having panic attacks about a month after diagnosis, and that was kind of the wake up call that I needed to get my head on straight. Was the best thing I ever did for myself.
You'll be ok. It takes time for things to sort of settle down in our lives after something like this. I'm glad you're working. I think it's a mistake to take too much time off after a PE, if you can help it. It's exhausting and challenging but normalcy and distractions really help me stay together those first couple of months after my PE.
Sounds like you're doing really well actually. Know that!
I'm so glad you reached out to this group. I've gotten a lot of comfort myself just by browsing through discussions and reading the caring, helpful advice from its members. You are definitely in good company.
Visiting your concerns with a doctor sounds like a good idea to me. I'd particularly want to know if you have a genetic component that predisposes you to blood clots. Statistically bcp are the most likely cause of clots in your age group, but considering your family history, your insurance may pay for further testing. In any case, you'd at least get more information.
There is some comfort in knowing that the blood thinner you're on does work and will likely prevent further clotting. With a little time you'll get you're equilibrium back and feel ok once again.
Good luck