Pericardium removed

[Eadaoin]

I recently had a laser lead extraction operation because my right ventricle pacemaker lead (in place for 11 years) had moved. It had perforated my heart wall and could be seen on a scan “poking out of your heart” as the Cardiologist cheerfully told me on the phone. I gather it is very rare indeed for a pm lead to do this. I was lucky enough to be referred to a leading Electrophysiology Consultant in London. The operation went well but, just as it was finishing, my blood pressure unexpectedly dropped. CPR was tried and failed so my chest had to be opened. They found that the pericardium sac around my heart was full of blood which was restricting it beating. The surgeon slashed the sac open - and in the process saved my life. (I am in awe of the skill and expertise of all who assisted). The thing is: I am left without a pericardium. Has anybody had theirs removed? How does it make you feel - physically and emotionally?

[Jalia]

All I can say is Mein Gott!! No experience of this but I will follow with interest. ..

You were obviously in the right hands to d/w this .

Wishing you well

J

[Eadaoin in reply to Jalia]

Thanks. I’m very lucky indeed. Had the op in a Hybrid Operating Room filled with scanners. Op carried out by a leading expert electrophysiologist with a team of cardiac surgeons standing by who went on to save my life. The NHS at its very best.

[Jalia in reply to Eadaoin]

Amazing ! I'm so impressed !

[Maya23]

I have had Pericarditis (inflammation of the pericardium) and that felt weird enough! I have heard that removal of pericardium is done in cases of Pericarditis where fluid collects and restricts the heart, so there must be people out there who have had it removed. I still have mine.

[Sunnie2day]

I have recurrent pericarditis with pericardial effusion, some thickening and some scarring (among other things, the last time I saw the cardiologist he told me I defy medical logic) and I'm told if I have another acute episode of pericarditis I'll probably find myself having the op to remove it.

From what I've read, a pericardiectomy is a lifesaver for those with constrictive pericarditis (when the sac fills with fluid including blood and restricts the heart pumping), and most patients can function without it as long as the lungs and diaphragm are functional.

Also, there is at least one post on the site from a person who has undergone the op and at the time of posting the discussion said he was doing well. If I can find it I'll ETA (edit to add) the link into my reply here.

ETA: found it:

healthunlocked.com/bhf/post...

[Eadaoin in reply to Sunnie2day]

That’s really helpful txs. I had read about pericarditis. It sounds very painful. I do hope you get sorted out or better still, stop having episodes. The blood came from the hole in my heart as they pulled the head of the pm lead back inside. It filled the sac. The pressure was squeezing my heart which was getting smaller and smaller. They tried to draw the blood off but it had clotted. I was later told “ you can live without a pericardium.” Looks like it’s true. Here I am 6 months later !!!pleased to have celebrated my 76th birthday on the way. Like you I appear to be outside the experience of even the experts. Let’s keep ‘em guessing. 😀

[Sunnie2day in reply to Eadaoin]

I went without an episode from 2005 to spring 2019, here's hoping I can manage to evade a recurrence again as long - and best wishes to you for continued 'keeping them guessing'! (My chest is still 'sympathy aching' from reading what you went through)

[Kj2004 in reply to Sunnie2day]

Am fed up with pericarditis too. It keeps coming back. Diagnosed with sjogrens and recurrent pericarditis march 2018 and have had pleurisy once and pericarditis 5 times in the last 18 months. Good luck

[Sunnie2day in reply to Kj2004]

And to you. Recurrent pericarditis is hard to describe to anyone who has never had pericarditis - you look 'fine' but you're in pain, can't seem to get a good deep breath in, and the worry it's about to progress to constrictive in the next 30 seconds never really leaves you.

And pleurisy, OH MY, that's a 'walk-in-the-park' said no-one ever!

[Kj2004 in reply to Sunnie2day]

Yes it's difficult and no one else realises what it's like as they don't have it and as u say u look ok on the outside. Nice to chat to someone who does get it thanks

[Ianc2]

Every now and again I read something on this site that sticks in my mind and think how fortunate I am to have the NHS and all its skills available. What a story!