Recent Pericarditis diagnosis

[Gizmo74]

Hi everyone, I was diagnosed with Pericarditis a few days ago after I was rushed into hospital with a suspected heart attack. (Very scary)!!

The hospital completed an angiogram on me at arrival and also diagnosed a, dilated ascending aorta and a bicuspid leaky valve.

The consultant who saw me would like me to return for a CT scan on my ascending aorta next week, which has worried me as, isn’t the Aorta the main artery that supplies blood to the body?? As originally they were going to refer me locally on discharge.

I’ve been put on Colchicine for 8 weeks, Bisoprolol and Lansoprazole, to help with the Pericarditis.

I’m after some advice and reassurance on recovery time and returning back to work( I have quite a physical job with lots of lifting , walking and driving) and weather Pericarditis is some thing that will re-occur again in the future.

I’m sorry for the long post but any advice would be great fully received!!!!

Thanks.

[Schora1]

Hi, most people suffer make a full recovery from pericarditis without more recurrences especially when as a result of a virus. However for some such as myself the pericarditis is caused by an underlying autoimmune or autoinflammatory disease. My peri is chronic, recurrent with effusions and I have had it now since 2006, though I only got a correct diagnosis in 2019. Some go on to needing a pericardiectomy when scarring and repeat inflammation causes constriction. Key to recovery is the colchicine, antiiflammatories such as aspirin or ibuprofen and rest.

[Gizmo74 in reply to Schora1]

Hi Schora1,Thanks for the advise, I think I just needed to speak to somebody else who has been through this and can reassure you that everything will be ok, as the pain I had initially was excruciating and the paramedics thought I was having a heart attack!!!

It looks like I need to just get lots of rest, which is something I’m not used to and is driving me mad already as I’m a very active person.

Had a few chest and neck pains yesterday in the afternoon and evening which seemed to reduce with taking ibuprofen, but I’m finding it hard to get In a comfy position to sleep.

It sounds like you suffered for a long time until you finally got a diagnosis? That must have hard to deal with for all those years.

And from what I have read up on so far it doesn’t seem like the condition is very well known and easily diagnosed.

Hope your ok at the moment and thanks for the the advise, which I will definitely follow.👍

[Schora1 in reply to Gizmo74]

Peri flares can be very scary as they do present as a heart attack although only once have I had raises troponin. Make sure you rest. Hope you feel better soon.

[Schora1]

You could join another forum which I am on. Its called pericarditis/pericardiectomy. Very few cardiologists and doctors understand or are knowledgeable about pericarditis, which is why it took so long to diagnose me, but you are certainly not alone.

[citygirl65 in reply to Schora1]

yes same here they dont know much about it hard to diagnose as far as i can see etc

[citygirl65]

yes hard to diagnose im used to being active before and im going crazy asked about exercise etc but no none advised rest rest rest but stressed as hell with living conditions damp house etc which is not doing no good no way of relaxing forgotten how to.

[Schora1 in reply to citygirl65]

So sorry you are suffering too. I too used to be very active but not been able to do any activities now since October 2017. I now have thickening of the pericardium and I wonder if this is partly due to incorrect diagnosis for 13 years and not knowing to rest. Damp cannot help your situation especially if it stresses you out.

[citygirl65 in reply to Schora1]

yes trying to move out of his damp place damp county everyone thinks its so lovel y yes picture esque but no good for health ..trying to get an exchange out of place coucnil dont care either etc doc its housing mp housing cab housing nightmare yes stress going break end of month hope rest but was hoping to sort out something so to chill when away .nightmare.

[Sunnie2day]

Sounds as though you're in very good hands - they want to be sure your aortic and other valve issues are monitored.

As for the pericarditis, too right, it's not been a thing over here in the UK, for the most part, so most medics are now on a learning curve with so many Covid patients developing it, and some showing up with the condition after they've been vaccinated. They will learn, but meanwhile...

Wish I could give you a better idea of how things will go for your pericarditis but the truth is I can't - as you've probably already worked out reading the replies you've got so far.

I would have posted yesterday but I was 'having a bad day' after using a string of 'good days' to convince myself my latest flare was FINALLY moving off. You'll see what I mean when you wake up one morning feeling more like your old self than you have for days/weeks and so you think you're recovered - and try to do catch-up...which leads to the next morning you wake up and feel nearly as horrid as you did when you were first diagnosed.

I've had recurrent pericarditis since the late 1990s after having Stage2 Dengue Fever, managed for years to avoid too many flares but then in 2019 had a bit of a wobble (lol, bit of an understatement, it was actually a pretty big wobble). I really am starting to pull out of my latest acute flare, I just overdid on a succession of good days and had to take yesterday as a 'sofa day'.

The following is a list of tips for home self-care during a flare - using the tips may help you recover well and avoid relapses or progressing to recurrent status. Feel free to copy-paste to a printable document you can refer to in the middle of the night without having to boot up your device:

General tips for coping:

**Sleep with your upper body elevated - either several pillows stacked and bound lengthwise, or a wedge pillow, or an adjustable back rest

**Avoid sleeping on your left side as the pain is worse if you put weight on the inflamed pericardium sleeping on your left side

**Avoid heat, humidity, and mould - no hot tubbing, sauna, steam bath, long hot showers

**Avoid strenuous activity - DO NOT think a good day means you can catch-up things you have had to 'let go', overdoing on a good day only leads to several bad ones

**Try to get at least 7 hours sleep per night. Eight is better but 7 is good

**Keep to a nutritious well balanced diet with lots of green leafy veg, fruit, and high quality protein like meat and cheese (but try to keep to a lower salt content if you have effusion - don't go overboard on lowering salt intake but try to keep it under 5g per day)

**Be alert to symptoms your condition is worsening - 'swinging fever' where it's high, then lower, then higher again in a matter of hours over a day; shortness of breath on slightest exertion and/or waking you in the middle of the night; night cough or cough when lying down; 'fat fingers' and other signs of fluid retention - these are signs of building pericardial effusion that could lead to a condition called 'cardiac tamponade' - when excess fluid build-up in your pericardium reaches a level that is beginning to affect heart function (like, beating). It is a life-threatening condition.

Please keep us posted as to how you get on with your valves and the pericarditis.

[citygirl65 in reply to Sunnie2day]

thanks for your reply sorry househunting online usuall y a day job yes not good yes gone vegan so not having fats diet will be better oven knackered not good sorry winge but this on top of housing mould is doing my head in now...yes good days ok then knackered next god help me when away for music weekend waiting for break so dancing probably off the menu then cant believe this no breaks for two years at the gigs ok then this just before i go 6 months or so. hacked off.

[Gizmo74]

Thanks for all the advice, I really appreciate it,it’s been a lot to take in over the last week.

I hope you are feeling better today?

I’m stating to feel a lot better now but still get out of breath doing light jobs and struggle whilst sleeping. I know what you mean about about needing lots of pillows and not sleeping on your left.

Fingers crossed my CT scan is ok and it is something that they just monitor going forward now.

[Sunnie2day in reply to Gizmo74]

Yepper, breathlessness is a given with pericarditis. Best thing is to be sure you have somewhere to sit or a stout wall to lean on whilst recovering your breath - if recovery takes more than a minute or two (no more than five and if it takes a full five minutes to recover your breath, it's time to stop trying to do so much), you need to report that to your medic as it could mean your progress is not going as well as it might.

I'm having a bit of a run of 'good days' now - Saturday and yesterday I even got out to the garden to putter around doing a bit of tidy-up before winter. My husband did the heavy work and I just snipped a straggle here, plucked a weed there (raised containers so no bending).

Please let us know how your scan(s) look. Monitoring is so important with pericarditis but the cath labs are so busy right now with Covid and catch-up that you may have to 'chase up' booking your scans.

[PericarditisModerna]

Just been diagnosed tonight after horrendous treatment from GP and Hospital, finally after repeated visits to A&E a senior doctor helped me out!! 46 yo male. 16.12.21 U.K. see we hat happens next I guess. : —(((