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 all
It is one year today since I had my PE and so I thought it might be useful both to me and hopefully to others to get my story and feelings down on paper.
I had about a 10 day history of being increasingly breathless but put it down to having a cold and was ignoring it! In the morning I had a very strange episode where I felt dizzy and sick and had to lay down for a few minutes. (Now know this was probably my blood pressure being in my boots but hey!). Being a nurse I ignored that too and went to work.
Later that morning I was breathless whilst talking and one of my nurses at work forced me to let a doctor listen to my chest. He sent me straight to A/E as he thought I had Pneumonia.
In A/E I still felt a bit of a fraud and despite my heart rate being 120 I still didnt feel too bad. To this day I feel I had someone watching over me that day cos despite such vague symptoms I had an on the ball doctor who investigated thoroughly. Even when he mentioned PE to me I was still laughing and joking and not taking things that seriously!
My D-dimer came back >1000 so they did a ct scan within a couple of hours and found extensive bilateral clots.
Spent a week in cardiac care as they thought I may need thombolysis treatment but luckily my heart rate settled and I was allowed home.
Then it hit me! Didnt find this site straight away so was left floundering not knowing what was normal. I ended up a jibbering wreck!
Medically my treatment has been a bit hit and miss especially about the length of treatment with one doctor stopping my warfarin after 6 months and then another starting it again as He feels I am at high risk for another clot.
Nothing has been found on genetic testing so in effect had an unprovoked PE which is at a higher risk of recurrence. Looks like I am life long warfarin which initially freaked me out but now am learning to live with.
It has been a year of so many ups and downs with a few scares along the way.
Have been unwell recently with chest pain and anaemia and doctors are looking at the bigger picture now and investigating. Think the PE may be a symptom of something else rather than a one off. Watch this space!
Emotionally I am 100 times better. Mostly through finding this site and the support here. I look at life in a whole new way. Try to see the positives and just have fun! No more moaning about small things.
So thanks guys. Couldnt have got through without you all and hope that this story will help those just starting on this road. Feel has made me a better person and thank my lucky stars for being here and making the great friends I have now.
Take care all
Kate xx
It is one year today since I had my PE and so I thought it might be useful both to me and hopefully to others to get my story and feelings down on paper.
I had about a 10 day history of being increasingly breathless but put it down to having a cold and was ignoring it! In the morning I had a very strange episode where I felt dizzy and sick and had to lay down for a few minutes. (Now know this was probably my blood pressure being in my boots but hey!). Being a nurse I ignored that too and went to work.
Later that morning I was breathless whilst talking and one of my nurses at work forced me to let a doctor listen to my chest. He sent me straight to A/E as he thought I had Pneumonia.
In A/E I still felt a bit of a fraud and despite my heart rate being 120 I still didnt feel too bad. To this day I feel I had someone watching over me that day cos despite such vague symptoms I had an on the ball doctor who investigated thoroughly. Even when he mentioned PE to me I was still laughing and joking and not taking things that seriously!
My D-dimer came back >1000 so they did a ct scan within a couple of hours and found extensive bilateral clots.
Spent a week in cardiac care as they thought I may need thombolysis treatment but luckily my heart rate settled and I was allowed home.
Then it hit me! Didnt find this site straight away so was left floundering not knowing what was normal. I ended up a jibbering wreck!
Medically my treatment has been a bit hit and miss especially about the length of treatment with one doctor stopping my warfarin after 6 months and then another starting it again as He feels I am at high risk for another clot.
Nothing has been found on genetic testing so in effect had an unprovoked PE which is at a higher risk of recurrence. Looks like I am life long warfarin which initially freaked me out but now am learning to live with.
It has been a year of so many ups and downs with a few scares along the way.
Have been unwell recently with chest pain and anaemia and doctors are looking at the bigger picture now and investigating. Think the PE may be a symptom of something else rather than a one off. Watch this space!
Emotionally I am 100 times better. Mostly through finding this site and the support here. I look at life in a whole new way. Try to see the positives and just have fun! No more moaning about small things.
So thanks guys. Couldnt have got through without you all and hope that this story will help those just starting on this road. Feel has made me a better person and thank my lucky stars for being here and making the great friends I have now.
Take care all
Kate xx
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
I totally relate to your rollercoaster of emotions. I was lucky enough to find this site pretty much as soon as I came out of hospital.I'm doing my first lot of genetic testing next week and stupid as it sounds I want them to find something. I hate not knowing why I had something that almost killed me and I would be more than happy to be on warfarin for life.
I'm glad you can see the positives in life and hopefully they'll soon find out what's making you feel poorly and make it right *hugs* Thanks for sharing your story, it definitely makes me and I'm sure many others realise there's light at the end.
Karen xx
I cannot believe it took nearly a year before they found me at FVLH. I had previously found some links to what it could have been, though obviously none represented the whole story. From my own perspective, had I gone through all this in a time twenty years earlier, my case would have been a mystery like yours. More is being discovered over time.
We have the same anniversary!
It was kind of odd, realizing that yesterday was a year.
I'm not off coumadin either. They haven't figured out if it was only birth control that caused my PE, but I had an IUD put in before I saw my hematologist and I have to stay on coumadin at least until that's taken out.
Was a bigger deal for me yesterday than I thought it was going to be and I must admit that I was a bit tearful and fragile. Cant really say why but it did help writing about it. Hope it didnt come across as negative as do really think I have come a long way and that is such a good thing.
Congratulations on your year too Nemtynakht.
Thanks again and hugs too
Kate xx
I think the most frustrating thing about the whole issue is not knowing where my clots are coming from. I have had every blankety blank test run at least twice and still nothing definitive on whats been causing my clots. The only thing left is my colonoscopy which is scheduled for April 6 to rule out colon Cancer. I guess if they find out I have colon cancer they can just cut it out and I'll at least be done with the rat poison huh?
Hope all goes well and remember your never alone.
HUGS and Best wishes
Ferr
Your story sounds like mine. I was just diagnosed on 3/3/09 but I thought I was just having a hard time getting over bronchitis. I had about a week and half of getting short of breath when co-workers kept telling me I should go get it checked. I was agreeing w/them as it wasn't like me to be so out of breath. I thank God that I did after finding out how this condition can be and often is fatal. Thank you for sharing your story. :)
God Bless you,
Tabitha