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.
Hi everyone! So glad I found this forum, it has been getting me through the last week. On December 14th I went to Urgent Care because I had been having trouble breathing for over a week. At first I thought it would go away, but then after some time I got scared.
At Urgent Care they insisted it was probably an anxiety attack and prescribed Xanax. I pushed for a battery of tests because my fear was it was either: COPD, Pulmonary Hypertension, blood clots or a thyroid issue. I NEVER go to the doctor without doing my research first to find out what I think it might be. Usually this makes me look like a condescending hypochondriac. Lucky for me, the doctor was willing to appease me (usually they just get annoyed, which I can understand). I told her that without these tests the "anxiety attack" could only get worse because I couldn't be sure.
The CT Scan came back showing a PE and multiple other little clots in my lungs. I was devastated (you all probably know this feeling too well). I'm 27, how is this possible? Will I be on blood therapy for life? Will I live through this? What caused it? I still do not have an answer to any of these questions.
So here I am, excited to be surrounded by other people who are experiencing the same thing. People I can share and gather information from.
Speaking of information.....I had a few questions. Obviously it is depressing in itself to be diagnosed with a PE, but on top of that I am scared of everything I put in or on me, which has led my to neglect my skin care these last 10 days and now on top of being depressed about the PE, I feel ugly and unattractive.
I want to start using my tretinoin cream and hydroquinone again, but none of the doctors I have seen (pulmonologist, primary care and coumadin clinic) seem to have a solid answer. They have no answers, just say something along the lines of "it should be okay". Uuuhhhhh, that is not comforting! Anyone with information about this I would greatly appreciate. Haven't found much from searching the internet.
I am grateful to be a part of this group and can't wait to get to know everyone!
At Urgent Care they insisted it was probably an anxiety attack and prescribed Xanax. I pushed for a battery of tests because my fear was it was either: COPD, Pulmonary Hypertension, blood clots or a thyroid issue. I NEVER go to the doctor without doing my research first to find out what I think it might be. Usually this makes me look like a condescending hypochondriac. Lucky for me, the doctor was willing to appease me (usually they just get annoyed, which I can understand). I told her that without these tests the "anxiety attack" could only get worse because I couldn't be sure.
The CT Scan came back showing a PE and multiple other little clots in my lungs. I was devastated (you all probably know this feeling too well). I'm 27, how is this possible? Will I be on blood therapy for life? Will I live through this? What caused it? I still do not have an answer to any of these questions.
So here I am, excited to be surrounded by other people who are experiencing the same thing. People I can share and gather information from.
Speaking of information.....I had a few questions. Obviously it is depressing in itself to be diagnosed with a PE, but on top of that I am scared of everything I put in or on me, which has led my to neglect my skin care these last 10 days and now on top of being depressed about the PE, I feel ugly and unattractive.
I want to start using my tretinoin cream and hydroquinone again, but none of the doctors I have seen (pulmonologist, primary care and coumadin clinic) seem to have a solid answer. They have no answers, just say something along the lines of "it should be okay". Uuuhhhhh, that is not comforting! Anyone with information about this I would greatly appreciate. Haven't found much from searching the internet.
I am grateful to be a part of this group and can't wait to get to know everyone!
I can definitely relate - I was diagnosed with my PEs and DVT four months ago, 4 days after my 27th birthday. It's definitely a scary experience at any age I'd imagine but I think for us younger folks the idea of being presented with your own mortality in your 20's is a bit sooner than we'd like.
I found this forum when I was still in the hospital and like you have found it to be super helpful and comforting. Not only because it seems like nobody around you in your life understands (because they really don't) but also because when you're having a weird pain or feeling it is nice to see that others have felt the same thing and it's normal.
Whether or not you're a Warfarin lifer will depend on our genetic testing I imagine (and perhaps your other health issues) - I came back positive for Factor II. I will be on Wafarin for a year but as of right now the plan is for me to go off it at a year and resume normal life! (with the requisite amount of anxiety I'm sure)
Everyone is different but your pain will likely start to fade in the next couple weeks and then come and go depending on how hard you push yourself one day or weather or any number of things. Anxiety and depression is a bit of a rollercoaster too but rest assured the anxiety does get better over time and you'll feel more confident once you're therapeutic and having less pain.
Hang in there! If you have any questions don't hesitate to ask.