British Lung Foundation
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COPD & Pulmonary Embolisms

I am in need of help from our community again.

I have just been diagnosed for the second time with multiple PEs and also have COPD. My questions are thus:

1) Diagnosis was delayed because I thought my SOB was caused by the cold weather. Has anyone else been diagnosed with PEs as well as having COPD? Do you have any tips as to how to tell the difference between the cause of the SOB?

2) I have been refererred for further tests as on both occasions the cause of PEs was unknown (I hadnt been on a long flight or had an operation) Has anyone else had PEs where cause was unknown? Any ideas what tests are likely?

3) I want to book a summer holiday. Any idea how long before I can be considered 'Fit to Fly'? I am on Apixaban

4) I am frightened to exercise too much as getting SOB might indicate recurrence of the PEs. Any advice about this welcome.

Sorry to ask so many questions. I am really worried.

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You are now on anticoagulant of some sort? And if the cause of the PEs is unknown then you should remain on them, probably for life. Warfarin is the commonest one but there are others. I agree it is difficult to work out which condition is contributing most to your SOB. I have both chronic thromboembolic disease and an airways disease (which I believe, somewhat controversially, was caused by the CTED) so it is hard to know what is what. If the SOB is caused by the PEs then it should ease as the clots resolve. 98% of people who get PEs make a full recovery, so lasting damage, CTED, is very unusual. And it can take a while for the body’s natural clot-busting to achieve its result. I hope you are being well looked after. Keep going back to your doctors if you are not satisfied.

All the best

K

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P.S. The tests you might need are a V/Q scan, which will show the areas where the blood is not flowing in your lungs, it will also show where air is not getting to parts of your lungs as a result of COPD. If there is concern about your PEs not resolving you should have an echocardiogram to check for any damage to the heart or the possibility of pulmonary hypertension. Sorry if that is all a bit scary. I stress that the vast majority of pool make a full recovery after PEs.

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Thank you Katinka46 There is a query that I might have pulmonary hypertension. do you know anything about ithis? My BP was high but is being controlled by low dose BP med. My hear rate remains high though. Usually around 105-10 when I get up in the morning. I find the latter worrying.

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Systemic Blood Pressure in our bodies, measured by a cuff round the arm, has nothing to do with Pulmonary Hypertension. PH is blood pressure in the blood vessels in the lungs and is independent of blood pressure elsewhere. The first test for PH would be an Echo, an ultrasound scan of your heart. Have you had that? It can look at any changes in your right heart that might show and can also look at the valve between the two chambers of the right heart and the pressure backing up. If there was any concern about the results of that showing PH then you would have to have right heart catheterisation. That is a more invasive test, a catheter is put down your jugular vein into the right heart and pulmonary artery and the pressures can be measured accurately. Sounds scary but it is painless. As you can see it is a subject close to my heart, literally! I think in my case it is a debatable point if I do have PH. There are some discrepancies in the test results. Let me know how things go.

K x

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Thank you for your informed response. I have not had any tests since the PEs were diagnosed. I will let you know how things go.Cx

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I am on Apixaban as my INR levels never stabilised when I was on Warfarin before

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I have pulmonary hypertension - it can be caused by chronic PEs - I understand Papworth to be the specialist centre for this.

I would talk to your team about ruling it out or investigations.

Hope this helps.

Jo

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Thanks HappyJo. Do you have COPD as well? Are you still allowed to fly with PH? My holidays in the sun are very important to me.

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Hi

No I don’t have COPD I have a restrictive spirometry which I am awaiting a CT for.

I haven’t flown since July 2017 and was diagnosed in September 2017 but would not get insurance whilst undergoing further tests and treatment.

It is by no means certain you have PH so try and approach the investigation and diagnosis stage open minded.

I am on a Facebook PH forum and they discuss the price of insurance and holidays though don’t know if these are cruises.

It might be worth posing the question on a new thread as there are people with PH on this forum who might know - I am still new to this.

Sorry not to be more helpful.

Jo

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You have been helpful HappyJo. I will leave it for now as what you say makes sense. My insurer wont cover me while I am undergoing invetigations. I just hope they hurry up. Thanks again x

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