Permanent damage after pulmonary embolism- experiences?

[SilverDragonfly1]

I had bilateral pulmonary embolism (embolisms?) in December 2010. Apart from the medication there was very little aftercare and a lot of vagueness about the short and longer term effects.

Nearly 6.5 years on, I think I have long term damage but I don't know if I'm over thinking or how to find out if I'm right.

While I can live life normally (for me, so quietly and gently!) without excessive fatigue or compromise, some things niggle. For example, I can't hold my breath at all if I have hiccups- I start to feel giddy and my heart flutters after less than 5 seconds. And any cold or hayfever at all turns into weeks of coughing unless I treat myself scrupulously with decongestants from the very first tiny scratch in my throat. Nearly four weeks ago I didn't do that, figuring I must be able to cope by now! Huge mistake. Have spent most of that time housebound and getting exhausted and breathless when I do go out. On Friday I pulled a muscle in my chest from coughing and now that's very painful and I can't cough hard enough to bring anything up. I am going to the doctor tomorrow.

Anyway, could I have lung scarring or some kind of damage? It was a serious event with multiple large clots, but was treated like a very minor issue once the medication was balanced, by every HCP I came into contact with. I've never smoked or been on a plane at all- it was likely caused by the pill but again there were no efforts made to find out. And the whole experience was very traumatic and I'm really sensitive about it even now. So apologies if I sound attention seeking or hypochondriac (because that is how I've consistently been made to feel when bringing this up with medical staff, so I've long since stopped bothering.)

I'd insist on a referral for a respiratory consultant who would arrange physiology studies; yes you could have been left with reduced lung function which could mean that you'd benefit from respiratory physio and an action plan going forward.

Thank you for the advice. I find it hard to insist on things about this particular problem although I have no issue doing so about my other ongoing conditions. I start getting choked up when I talk about it :/ and I'm really not a crier! So it's very useful to have proper terms to use for when I do ask.

You should definitely speak to your GP about your symptoms. If they've been dismissive in the past then perhaps don't mention a possible link to the PE to start with, just what symptoms you are having.

I had multiple bilateral pulmonary emboli last year. I don't think I have any ongoing issues. Certainly nothing that extreme. I was told there would probably be no permanent damage. I had an echocardiogram to check for heart strain, but it was fine.

I'm sorry you found the experience so upsetting. I had quite a similar experience. I think that's the standard treatment for a pulmonary embolism. There's not really much they can do apart from waiting for the clots to dissolve and giving the medication to prevent future clots.

I hope you get some answers soon and that your symptoms improve

Sorry to hear that Leslie and I'm very glad you're recovering well.

The issue I had, and I've posted about it before I think, is the vagueness and dismissiveness (worst episode of The Family Ness ever!) as I was shuttled from department to department and the lack of any useful information. For example, the only reason I know how many clots I had (2 large in each lung and multiple small ones) is because 'my' specialist rang me up to tell me off for discharging myself from hospital after a dreadful night on the admissions ward where, apart from the constant bustle and noise that's inevitable, I also had to deal with a man with dementia who kept coming into our female bay and leering at us- absolutely not his fault but none the less stressful for that. I say 'my' specialist because that is literally the only communication of any kind I had with her throughout my treatment! And all she was really interested in was finding out which doctor had let me go so she could rant at him. I didn't tell her! But when I found out the woman opposite me had been stuck in that bedlam for 3 days because there were no beds on a suitable ward for her condition, there was no way I was staying. And of course, since HCPs had not given me any real inkling of how serious it was, i didn't see why I should.

Sorry, long rant and that is only a tiny example of the chaotic treatment I had. Which ended with me pointing out to my warfarin nurse that my yellow book said I should have 6 months of warfarin therapy and it had actually been over a year so did she know when I would be allowed to stop it? and her admitting she'd not even noticed the time limit suggested so I might as well just stop now.

I really need to request my notes from that period.