Pericardial effusion

[Bellap27]

Pericardial effusion at the age of 40! No reason found so far - is this common ?!

[Sunnie2day]

It is common, actually. Pericardial effusion can happen to anyone of any age. One of my multiple heart conditions is recurrent pericarditis (diagnosed in late 90s-early 2000s and I was in my early 40s) which now includes scarring, thickening, and what appears to be a permanent 'slight' amount pericardial effusion.

It has always been my understanding pericardial effusion is the result of an acute bout of pericarditis - what 'they' sometimes can't work out is what caused the pericarditis and why it caused the effusion (fluid in the pericardium).

If it helps you any at all, the amount of effusion you have is most likely slight - if you had a large amount present they felt might develop into cardiac tamponade (when the amount of fluid becomes so high it causes the heart to be constricted), your medical team would have either done an emergency pericardiocentesis, or would have booked you for one in very short order after discovering the fluid in your pericardium. I've had the procedure and it's not pleasant.

Are you scheduled for a follow-up echocardiogram to chart the progress of the effusion? Are you on Colchicine (commonly prescribed for pericarditis) or any other medication? Are you in the UK?

I ask about the UK as I know from experience there are only a very few pericardial specialists in the UK so we have to rely on cardiologists who may not be 200% up-to-date on the condition. It's a 'tricky' condition not well understood so self-educating is important - go to the BHF publications pages and use the search feature to look for downloadable leaflets about the condition including pericardial effusion and how to 'home-care' for it.

ETA: also use the search feature here on the BHF-Health Unlocked pages using the search term 'pericarditis' and 'pericardial effusion' - some very helpful discussions there!

[Bellap27 in reply to Sunnie2day]

Thanks a lot for replying so do you always have pericarditis before an effusion? I have no history of any heart issues it all started with a hoarse voice !

[Sunnie2day in reply to Bellap27]

Put the kettle on and open the biscuit tin - this is a long answer, sorry about that! My advice is to copy and paste it to a word.doc so you can refer back to it in smaller, easier to handle doses Also, I want to stress first and foremost - I am not medically trained and am completely speaking from personal experience. The only real guidance you should rely on is your medical team's. Only.

Give this link a look-over. It's to an American site and is globally respected:

mayoclinic.org/diseases-con...

The quick(ish) answer to your question is pericardial effusion is usually a complication of pericarditis - but not always as it can also be a complication of autoimmune conditions, injury or surgical trauma, more at the link. It's a good starting point for newcomers to the condition and is written in easy to understand terms that don't insult your intelligence.

The best thing for you would be to talk with your GP, or if you have one, a cardiologist. Note your questions on a piece of paper and take your notes with you to the appointment so you can get full answers to your questions from a medical professional. You'll need to politely push hard if you feel you're being shrugged off or not being given sufficient information - not to cause you undue alarm but the condition needs to be monitored in case it progresses to constrictive pericardial effusion as that really can be life-threatening.

My personal experience with pericardial effusion is from being diagnosed with recurrent pericarditis 20 years ago (so now you should feel some reassurance this is usually not a life-threatening condition); my effusions have always been associated with an acute flare of pericarditis and have usually 'cleared' or 'drained off' on its own without the pericardiocentesis - until now, the effusion seems to want to hang on and they're trying to work out why that is without subjecting me to the pericardiocentesis that is not pleasant (and yes, I'm downplaying the sheer horror I feel contemplating having to go through that).

A pericardiocentesis is very helpful (but oh my is it unpleasant!) - an aspirating needle is guided by echocardiogram through your topically anaesthetised chest into the pericardium. The fluid (some or all) is extracted through the needle and collected for testing. Sometimes (if you're an 'old pro' at the procedure) they let you go home a few hours after the procedure, sometimes they keep you in hospital 24-48 hours. The topical wears off within a few hours and blimey does your chest ache for days and you have this stonking big bruise around the insertion point; recovery usually takes a week or so depending on your general otherwise health at the time of the procedure.

The extracted fluid is tested for signs of blood and infection, from there the medics can usually (but not always) determine the cause of the effusion, and any treatment required.

For most people, pericarditis and pericardial effusion are self-resolving, like having a light flu. Most don't even know they have it and rarely present to GP or A&E with symptoms. So it's not something most medics here in the UK have a lot of experience with.

But for some with the condition, the initial case of pericarditis progresses to the complication of pericardial effusion - which usually does send them to GP or hospital and which is probably what has happened to you.

The initial pericarditis can also lead to a diagnosis of 'relapsing' meaning the initial case seems to clear up but then returns within a short period) or 'recurrent' meaning the initial case clears completely but another case flares up months or years later, and then after the second case clears, it happens again, and again...every time a completely new case of the condition which then leads the medics to diagnose 'recurrent'. In those cases, pericardial effusion, from what I've discovered doing quite a lot of reading and talking to pericardial specialists over the years, is almost always present.

All of which is why you need to make sure your medical team is paying proper attention to your pericardial effusion - they and you need to know if it was brought on by pericarditis or injury, or surgical trauma or what other situation may have caused something to progress to effusion, and what if any treatment they can guide you through.

Often they can't determine the cause(s) and so term it 'idiopathic' (meaning unknown causes), and if I'm honest, unless someone on your medical team is a pericardial specialist, the tendency is to sort of shrug and then manage any emergency complications that may arise (for example, constrictive pericardial effusion).

If you have comprehensive private insurance you may find that more helpful getting more information and a treatment plan that includes guidance regarding how to avoid triggering an acute flare and helping your body drain the effusion without invasive procedures like the pericardiocentesis. If you don't have private insurance but do have a spare £1000 or so to seek private care, at least you'll (usually) skip the long NHS waits and a treatment plan transferred to your NHS GP and cardiology team so you can be supervised properly.

[Bellap27 in reply to Sunnie2day]

Thanks so much for taking the time to reply to me and give me more info than any medical professional has bothered with ! Alison

[Sunnie2day in reply to Bellap27]

Hiya, Alison. I really am 'Sunnie' (childhood nickname meant to shame me out of my Lady Curmudgeon tendencies - lol, not sure it worked as I'm 63yo and still quite the Lady Curmudgeon according to family and friends ).

I am so happy with the care I and family have received through the years from the NHS but I do have to say most NHS medics are just not familiar with some conditions like pericarditis and pericardial effusion so they generally don't have much info to pass onto the patient. We really do have to do a lot of the research ourselves and it's not always easy to work out what of that research is reliable. Makes it all 'more fun' (heh).