I had unprovoked pulmonary embolism in September 2016 ,treated with 3 months of heparin injections. In July 2017 I had another one. Now I’m on lifelong Warfarin. My life /lungs never been the same again. When it was diagnosed I had shortness of breath on any physical activity. I don’t smoke, never did or drink alcohol. Since the first PE every time I’m about to get cold and during a cold I’m out of breath. When the cold goes so do the symptoms. Sometimes my left lung hurts during the cold. I was told the cloth is/was on the main pulmonary artery. I went to A&E number of times , CT done all they said is the old clot there. So I looked like a twat all in my head - BP high and heart fast. On the end I started to believe it’s in my head. Last October one doctor in A&E referred me to a lung clinic. So now I’m being tested for asthma and allergies. I have plenty medical problems but I just want to know is it in my head??
Hi everyone I’m new to this community... - British Lung Foun...
Hi It isn’t in your head, if the old clot has not resolved. If it is still there it will still cause some problems. Are you on FB there are some excellent support groups on there for Pulmonary Embolism.. I had two episodes of PE in 2019 I also have asthma and I have nor recovered back to where I was yet.
If there is still evidence of clots on CTscan after all these years then surely you have Chronic Thromboembolic Disease? CTED almost always causes Pulmonary Hypertension (PH). PH is evident on echocardiogram. Have you not had a Echo? If there is PH then you should be referred to a specialist PH unit to be properly assessed. Are you in the UK?
All the best
I had two PEs last year too and am having breathing difficulties following regular chest and respiratory infections recently, so frustrating and debilitating, but I am quite sure it is not in your head. You can never be too careful with these things, so it’s important to always get checked out if you feel something isn’t right. Good Iuck with the lung function tests and hope you get some answers and some support soon. xx
Of course it's not in your head Bakery. The evidence is there in the clot.
I know nothing about PE so I hope others will come along who've experience of it. I can only guess it's pretty life changing and takes ages to get over.
Good luck - and never feel bad about seeing doctors GP or others, it's our right here in the UK for good health care, our lungs are vital.