Pericarditis and effusion

[Westie2012]

Christmas Eve I started getting really short of breath that worsened very quickly to the point of not being able to t walk more than a few steps without needing to sit down and get my breath back. I’ went to see my gp, as I walked into the building I started throwing up violently . She called an ambulance as my heart was going at 150 and I was rushed in on blue lights and sirens with the paramedic alerting the hospital . Finally admitted to CCU many hours later. I was started on IV antibiotics plus oral antibotics , colchinine, ibuprofen and codeine. Every time I ate or had medication I was throwing up again which took a few days of sickness meds to settle. Lots of heart scans ecgs blood tests revealed the fluid had increased from a previous scan. They left me to rest for a few days before repeating the scan. The consultant that did the scan on the Tuesday after Christmas told me luckily the fluid amount had lessened as he would have had to remove the fluid that day so I narrowly avoided an unpleasant risky procedure . I was feeling a bit better by Wednesday daytime then later that evening I was feeling short of breath again. It settled down but a few hours later I had really bad chest pain again . I was given an ecg which was ok and gtn spray , now when they warned me it might give me a headache they weren’t joking. It took 10 hours of me sleeping for it to go away. I was finally allowed home in December 30th abs since then I keep feeling very emotional at the thought of everything that has happened including a few emergencies on ccu when the crash team has come running . Lying there listening to what was happening really scared me. I felt really scared at the thought of leaving the safety of the hospital and when I got home seeing the Christmas tree reminded me that I wasn’t well enough to be there with my family. I’m so grateful to be home to recover and I’ve been told repeatedly that should any symptoms come back worse I must go straight to hospital as they will have to drain the fluid. A lovely consultant took the time to explain the seriousness of pericarditis whereas before I haven’t been told much so I feel more prepared to cope and I know I must rest much more than I did it after I was discharged last time . I’ve had such a traumatic time and events keep running through my mind. I am finding it difficult emotionally at the moment. How do I move on mentally as I get upset very easily at the moment.

If anyone takes the time to read and reply to my long post I thank you .

[Kristin1812 Heart Star]

I’m so pleased things are at last clarifying and are turning out OK, for you. That’s quite a journey you have had. I’m also so pleased you got the emergency care you really needed at a time the NHS seems so overwhelmed with needy Covid patients.

Great testament to the NHS, and very reassuring to hearties who may need some ‘serious’ care!

[Sunnie2day]

Hiya Westie, I'm sorry to read how you spent the last week of 2020, glad to read you're home now. I apologise in advance for the long reply.

As you know, real recovery will take a fair long while and that's just the physical recovery bit - having had recurrent pericarditis since the late 1990s I sometimes think the mental recovery is longer and more difficult.

I'm in the middle of yet another acute flare and despite my decades of coping with this wretched condition I am still having a spot of trouble with both physical and mental recovery. I have actually had to post notes in prominent positions all through the house reminding me not to overdo on 'good days' where I feel so much better I dare allow myself to think I'm on the mend. As you note in your OP - overdoing is a mistake that only leads to relapse, you'd think I'd know this after all these years but nope, I still find myself overdoing on good days which leads to bad days...

For me, the mental part is coping with the seething underlying anger being in an acute flare and subsequent recovery period that causes me the most difficulty - I can't stand being immobile and pericarditis renders one practically immobile. When I'm having a good day I have to remind myself constantly not to overdo and that leads to frustration at the limitations this condition puts on my life. The overwhelming fatigue an acute flare of pericarditis causes feels like the worst part - it can, on bad days, be exhausting just lifting the legs up on the ottoman. Contemplating going from bed to wc to kitchen to living room sofa takes several minutes and then there is the actual physical movement of getting those short distances...and that, for me, leads to anger at the incapacity the condition brings on. Coping with the condition 'ain't easy' - understatement of the year, I think.

Over the years I've taken up several handcrafts to work when having to sit with my feet up (to prevent oedema to knees-calves-ankles); I knit (badly, lol), I crochet (reasonably well, I make hats, arm-wrist warmers, and blankets), I do needlework - the needlework has spun off to a small business so I don't feel completely useless and I've found that sense of accomplishment helps ease the frustration and anger. I've also taken up learning Italian (ultra fail, I keep lapsing into Spanish, lol!), studying economics and geo-politics, and a few other brain challenging topics to keep myself busy whilst having to sit on the sofa wishing I'd never contracted the blasted Dengue Fever that brought on the recurrent pericarditis.

I'm retired now but when I was in work, having recurrent pericarditis was a constant battle for me on both fronts - I became something of a germaphobe trying to avoid catching anything that might lead to more complications, and the struggle to remain productive at work often was so difficult I would used to cry from the exhaustion during the drive home at the end of each working day. After one of my staffers ignored my memo ('If you even think you are coming down with the flu - do not come to the office!'), coughed all over us in a meeting and put me and a few others of us in that meeting in hospital for weeks (during the H1N1 pandemic) - I took early retirement and have never once regretted that. But over ten years later I still remember that twit and it is not with any fondness, that remembering. If you're still in work but close to retirement, consider taking an early one if you can. If not, consider talking with your management people including HR to find work-arounds so you're not eliminated from promotion possibilities.

Re the effusion - hopefully the consultant told you if when reclining or lying down to sleep you have worse chest pain or you find yourself coughing (you may wake in the night coughing), it is time to ring 999 - the chest pain and/or coughing when reclining or lying down is a signal the effusion is increasing and may indicate a life-threatening situation.

Re pericardiocentesis - it's horrible if having to be done as an emergency because the anaesthesia doesn't always have time to take effect before they have to insert the drain. But on the plus side, the drainage gives near immediate relief from the pain of the effusion, recovery from the insertion 'discomfort' is fast (2-3 days, the bruising and insertion wound healing takes about 5-7 days, the little scar from the insertion wound usually fades away in a year or so) and they can test the fluid to see if they can discover what is causing the pericarditis.

Again, I apologise for the lengthy reply but hopefully you will something in it to be of use to you.

[Westie2012 in reply to Sunnie2day]

Thank you so much for taking the time to reply . It is very informative and really helpful to hear from someone who has experienced things for themselves . I am 47 and was completely healthy until summer 2019 when my heart problem first started with mild symptoms . Thankfully my GP finally got me the necessary tests to diagnose my condition after being repeatedly told my fast heart rate was only anxiety. I worked at Debenhams until august 2019 when I was made redundant with 2500 others. I started an online course to train to be a SEN teaching assistant and I was due to start my placement when I was told I needed a pacemaker. I had planned on postponing my placement until mid January but with the added complications and recovery period I now need plus the fact schools are closed again has added more time before I am well enough for my placement . My problem is that as soon as I feel slightly better I start doing little bits around the house then a few hours later I regret it when the pain comes back with a vengeance . Early hours of this morning I had around 3 sudden really painful twinges which scare me as I’m so worried about having to go back to hospital for a very horrid scary sounding procedure . You’ve certainly been through so much yourself and it is a difficult illness to accept , I am used to doing majority of housework myself with just some help at times so I find it difficult not being able to do really anything but the consequences if me doing too too much are enough to stop me . Thank you again fir your advice , take care Ave stay safe xx