Hi everyone I’m new to this community... - British Lung Foun...

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Hi everyone I’m new to this community. I’m wondering if anyone is having slight breathing problems when having a cold after having PE twice.

Bakery40
Bakery40

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??

12 Replies
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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.

Bakery40
Bakery40
in reply to Tia4209

Hi Tia4209 , I have FB account but never go on it. I check it out. Did you get asthma after PE?

Tia4209
Tia4209
in reply to Bakery40

No I had it already but in the support group some people report that they have developed it after and / or been prescribed inhalers to help with their breathing.

Bakery40
Bakery40
in reply to Tia4209

Thank you. I have a lung function test next week which should give the answer or some answers. I just want some diagnoses and treatment not : everything ok, we don’t know.

Thank you Tia you gave me some hope 🙂

Tia4209
Tia4209
in reply to Bakery40

Unfortunately a lot of people with a PE history are looking for answers that the medical profession seem unable to give. I get a lot of reassurance from the group as the Dr’s just tell you all is ok when it really does not feel like it is. Have you had an echocardiogram.

I don’t think it’s in your head. I’m glad that you’re having more tests.

Hello Bakery40

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

Kate xx

Bakery40
Bakery40
in reply to Katinka46

Hi Katinka46, my heart was checked after I had the PE's and thank God all clear there.

I'm in the UK.

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

Bakery40
Bakery40
in reply to BlueRaptor

Hi BlueRaptor , thank you for reassuring me. Seriously sometimes I think think is this right I want positive result ? Whatever it is a deal with it. Thanks again and take it easy 😊.

BlueRaptor
BlueRaptor
in reply to Bakery40

My pleasure, hope you get some answers and help soon x

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.

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