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, thanks to everyone here for being so open and generous about sharing their own experiences of PE. I have spent many hours reading your posts and it has been so helpful. I left hospital 2 weeks ago, shocked, bewildered and more than a little bit frightened!
My story of a PE started in the middle of January. I had an apparent chest infection, pain in shoulder and lung, and pleurisy on chest xray. Antibiotics and painkillers followed. I missed 2 days work, took a 2 hour flight....and was getting on with things. However the pain in my lung came and went, though I stopped coughing blood. I didn't feel right for many weeks. I struggled to work full time and in the evening had no energy to play with my young child. Almost six weeks later the symptoms returned, this time on the other lung. I felt like I had a virus and the pleurisy symptoms were back....but much worse this time. My doctor diagnosed a viral illness but gave antibiotics just in case. About a week in to this episode, i suffered horrific pain in the effected lung and shortness of breath. I coughed more blood and the pain receded. It was night time and I couldn't face the ER. I returned to work two weeks after becoming unwell. I still felt unwell with intermittent pain in both lungs but only mild and transient SOB.
My doctor had told me to get a repeat chest xray after 6 weeks but by now I felt there was something very wrong with me. Lung cancer was top of my list! I had the repeat xray after 3 weeks and went to a lung specialist. The follow up xray was clear on both sides....the pleurisy was gone but I was still in discomfort. He reassured me it wasn't lung cancer and concurred with my regular doctor it was probably viral. However he organised for bloods, including a d-dimer just to be sure. I had the test a week later when feeling very unwell (sore throat etc.). Two days later he rang me....it was elevated and he ordered a V/P scan.
A clot showed up on one lung......the other one (the first one with pleurisy) was clear. In shock, I was admitted to hospital to start treatment and further tests. No clots were found on my legs.
I am trying to understand how all this happened. I am 42, female, with no risk factors I am very worried that this clot (or clots if I had maybe had one already) is a sign of malignancy. I see that this has been a concern for others on this site too. I am going to have a few more tests concerning malignancy but it will be a few months and I am finding the uncertainty hard to manage.
I would be grateful to hear how others have managed this and also what follow up tests you underwent.
Many thanks
My story of a PE started in the middle of January. I had an apparent chest infection, pain in shoulder and lung, and pleurisy on chest xray. Antibiotics and painkillers followed. I missed 2 days work, took a 2 hour flight....and was getting on with things. However the pain in my lung came and went, though I stopped coughing blood. I didn't feel right for many weeks. I struggled to work full time and in the evening had no energy to play with my young child. Almost six weeks later the symptoms returned, this time on the other lung. I felt like I had a virus and the pleurisy symptoms were back....but much worse this time. My doctor diagnosed a viral illness but gave antibiotics just in case. About a week in to this episode, i suffered horrific pain in the effected lung and shortness of breath. I coughed more blood and the pain receded. It was night time and I couldn't face the ER. I returned to work two weeks after becoming unwell. I still felt unwell with intermittent pain in both lungs but only mild and transient SOB.
My doctor had told me to get a repeat chest xray after 6 weeks but by now I felt there was something very wrong with me. Lung cancer was top of my list! I had the repeat xray after 3 weeks and went to a lung specialist. The follow up xray was clear on both sides....the pleurisy was gone but I was still in discomfort. He reassured me it wasn't lung cancer and concurred with my regular doctor it was probably viral. However he organised for bloods, including a d-dimer just to be sure. I had the test a week later when feeling very unwell (sore throat etc.). Two days later he rang me....it was elevated and he ordered a V/P scan.
A clot showed up on one lung......the other one (the first one with pleurisy) was clear. In shock, I was admitted to hospital to start treatment and further tests. No clots were found on my legs.
I am trying to understand how all this happened. I am 42, female, with no risk factors I am very worried that this clot (or clots if I had maybe had one already) is a sign of malignancy. I see that this has been a concern for others on this site too. I am going to have a few more tests concerning malignancy but it will be a few months and I am finding the uncertainty hard to manage.
I would be grateful to hear how others have managed this and also what follow up tests you underwent.
Many thanks
1. Cancer: you docs sound like they are already screening for that and you can have PEs and not have cancer.
2. Not having blood clots in your legs: If you are RX BC pills they are sometimes the cause or you could simply have an unknown cause like me. Sometimes for some unknown reason people will get PE.
It takes time to heal but you will recover. I had my PES two years ago (it will be two years 6/21) and I exercise five days a week and I am in better shape then prior to getting my PEs. Take it one day at a time! people here will have your back and help you through this tough time.
Anyway thanks again for your reply, its good to feel I am not alone.
One other possible cause of PE's that I did not discuss with you are genetic disorders. Most likely your doc will screen for those in the next few months.
Im not going to say the thot of cancer never crossed my mind thru this bc of the symptoms & severity of pain.....But if thats the case... So did heart attack, collapsed lungs, pnemonia etc... & i didnt hav any of those.. Although my body still sends me mixed signals, i have learned not to panic over things i dont have.. Is it ez? No.. My faith truly helps!!! & helps me keep my sanity..!!!! Without a doubt!!!
Even thru all this God is soo good.. & I have to say that! There was a scripture that stuck in my head every day since I was in the hospital..."I shall not die, but live, & declare the works of the Lord."
I feel so blessed to be alive & hav a new perspective on alot of things.. Welcome fellow survivor :-*
I think the experience has left me with so many questions. I don't know if I had one PE or two (both part of same clotting episode). I don't know if the'virus' I had was just my body reacting to a clot or was a separate illness that perhaps increased the chances of a clot (I have read that an acute infection increase risk). I am fairly sure its not genetic (no family history, got through a pregnancy) though I could be proved wrong by the tests.
It seems to me that medicine still has a lot to discover in this whole area and there are few definitive answers. I find not knowing very difficult.....that's unfortunately my personality.
I know I have been so much luckier than many and really should have gratitude that I am still here. I am going to try and focus on that and stop feeling sorry for myself!
Thanks again.
The uncertainty really can be hard to manage when it comes to clotting. I've clotted three times. The first two times were both just DVTs and were blamed on different types of birth control (BC). When I had my PEs, however, I hadn't taken anything hormonal in almost a year and I had no other risk factors at all, which of course sheds some doubt on the earlier assumption that BC was causing my clots.
So, that left me in the same boat that you are in now. Not knowing where the clots were coming from. I've had all the bloodwork to look for genetic factors and disorders--some of the tests have been run three separate times!--but I'm negative for everything. They told me in the hospital that I just might have something they can't test for yet.
You're quite right that this is still an evolving area of medicine. There are clotting tests that have only been developed in the last 10-20 years or so and they learn new stuff every day about clotting. So, maybe someday I'll know why I clot... or maybe I won't. I've learned to live with the uncertainty (and I'm a lifer on warfarin, so it probably doesn't matter either way), but it can be hard to get your mind around that for sure. It's taken me a long time to get to that place.
However, what I do have is a long, long family history of cancer. Practically every relative on my mom's side has had some form of it (and my mother has had it three times). So, of course, I was worried about cancer playing a part in my clots and I've had testing done there too. Nothing showed up at all and I've had multiple doctors tell me that most of the time, you know about the cancer before you know about the clots. It is possible to have clots that indicate the presence of cancer but it is very, very rare. Still, I know it is hard to not worry about these things and I'm glad they are checking you out thoroughly. I'm more than three years out from my clots now, and still no cancer.
Hang in there! There are some bad days with this recovery and some good (both mentally and physically). Eventually the good days will outnumber the bad, but in the meantime, it can be hard to tell which one you're waking up to every day.
Best wishes
I am finding suddenly thinking about tablets all the time very hard. I am still taking an injection as well. It is quite an adjustment from never thinking about what I ate or drank. I am terribly tired though I think thats probably psychological as much as physical.
Certainly, as you say, it has been a godsend to find this site and it really has reduced some of my fears.
Many thanks for your reply.
Being a control freak I have driven myself half mad reading articles to try and understand but I am still none the wiser. Looks like I am going to have to find some way to accept the not knowing!
I feel like a ticking time bomb.....hope this passes soon....
Thanks so much for your reply.
Best wishes.