Feeling of Pressure After A Pulmonary Embolism

[WaspSting]

I suffered a Pulmonary Embolism in my right lung back in November 2018. Ever since I have had an uncomfortable feeling of pressure where the PE pain originally presented itself. I have subsequently had a number of scans such as a CAT and an ultrasound, and these have found nothing. Has anyone else suffered from this feeling of pressure and if so does it ever subside? It is causing some anxiety as Im worried what is happening and fearing the worse.

[Katinka46]

Hello WaspSting

98% of patients who PEs make a full recovery so the numbers are on your side. It can take a while. However there are a few who do have long term damage (chronic thromboembolic disease, CTED) and I am one of those. You mention an ultrasound scan; was this an Echocardiogram? If so I expect they were looking to see if you have pulmonary hypertension. Have the results if this been discussed with you? Even if the pulmonary artery pressures were normal it would not necessarily rule out CTED. I assume your CT scan was a CT pulmonary angiogram. That’s when they give you a dye trace so that they can see if the blood vessels in your lungs are blocked by unresolved clots. And just to make things complicated that scan should be looked at by super specialist radiologists at your nearest pulmonary vascular disease unit (PVDU). There are six in the UK. I had a CTPA looked at by a local radiologist who could see no CTED. A year later that same scan was looked at at my nearest PVDU and CTED was finally diagnosed. One of the best tests for CTED is a V/Q scan. Have had that? And what are your symptoms? Are you breathless? How did you get the PEs in the first place? And I assume you are still on an anticoagulant?

Sorry about the interrogation but it is a subject close to my heart —- literally.

I should like to hear a bit more about your story if you are comfortable telling it.

K

[WaspSting in reply to Katinka46]

I came off Warfarin in early may. The ultrasound was to check organs in the area where I was experiencing the feeling of pressure. The CAT was in fact accompanied by the dye injection as you've described. The cause was an unprovoked DVT from my left leg, but I have had no discomfort or symptoms to support this diagnosis. I have had tests to check if I am prone to clots which came back as normal. I have regular heart scans as I was diagnosed with a very mild form of Hypertrophic Cardiomyopathy called ASH back in about 2012. The registrar who looked after me the two weeks I spent in hospital has reviewed my tests and scans and I have received a letter confirming the CAT and my blood test have returned unremarkable results. I see him again in a few weeks. I cant say I suffer from breathlessness just a permanent feeling of uncomfortable pressure just under the bottom of my ribs on the right hand side.

[Moolies in reply to WaspSting]

Good morning waspsting I have just read your reply I wonder if you can give me some information on behalf of my friend who is in hospital with multiple clots on his lungs and legs are giving him blood thinners his kidney is not working properly and he has an infection in his body we are so very worried about him can’t seem to get the right information from the nurses he’s in NHS hospital can never get through we are very frustrated he also unfortunately has m.s

[WaspSting in reply to Moolies]

Sorry to hear about your friend. My situation is far less complex from what you’ve mentioned in your reply. I had a really nasty infection when I finally took myself to A and E which the doctors thought may be sepsis. This took about a week to clear with intravenous anti-biotic. It was about 2 days before they diagnosed me with PE and was put on warfarin due to me being 6ft 4 and 20 stone. I was discharged exactly two weeks after my admission and asked to attend warfarin clinic every two days. That was about all the aftercare I received. I have since been taken off warfarin but as mentioned in my initial post have had to return to my GP due to the feeling of pressure. This is an ongoing situation which is not yet resolved. I can’t really offer anymore details as the communication between my doctors and myself has not been the best and I feel my aftercare has been poor with absolutely no attention given to the affect this has mentally. Hope your friend improves quickly.

[Moolies in reply to WaspSting]

Thank you so much for your reply he also has Multiple Sclerosis so he can’t move around and this really does make it difficult to clear I’m so sorry about your after-care it doesn’t sound very good really lucky to get a good doctor makes all the difference I do hope that you will feel better again soon x