Anyone here had Constrictive Pericarditis?

[Pinkysparkly]

Hi there. Just wondering if anyone on this group has had constrictive pericarditis or a pericardectomy done? Thanks.

[Scho1]

Hi, I have not yet had a pericardiectomy/pericardial stripping but there is a group of which I am a member called pericardiectomy/pericardial stripping. Phil Martlew is one of the admins of the group. The group is very supportive and informative especially as many including Phil have had pericardiectomy. Hope this is useful for you.

[Pinkysparkly in reply to Scho1]

Hi there. Thank you so much for this group info. I will certainly join this group.

[Pinkysparkly in reply to Scho1]

I’ve tried to search for the group you mentioned and nothing has come up! Could you direct me on how to find it, please? New on here and finding my way around the site. Thank you.

[Sunnie2day in reply to Pinkysparkly]

Schora might have been referring to one of the excellent FaceBook groups. I'd link it for you but I don't FB. If you do, you can do a search on the site main page and it should pop up for you.

I have recurrent pericarditis that has on occasion caused constriction owing to sharply increased effusion and led to more than a few pericardiocentisis events (not. fun.). Stripping the pericardial sac (mine is thickened and scarred) has been suggested once or twice since my initial diagnosis in the late 1990s but I manage to dodge it and the diagnosis of constrictive pericarditis owing to very careful management (mine and the medics) of my condition.

Have you been recommended to have the procedure? When were you diagnosed as having constrictive pericarditis?

There are a few members here on the forum who have had the procedure with varied results - some report continued/increased issues and others say it's the best thing they've ever done.

[Pinkysparkly in reply to Sunnie2day]

Ah ok. Thank you for clarifying.

Yes, I’ve been recommended to have the procedure as diagnosed in 2019 with constrictive pericarditis. I should have had the op done last year but due to covid and other issues, that got put on the back burner for a bit! Had an angiogram done in December which definitely showed the constriction. Saw the surgeon in August who gave me a 4-6 week timeframe to get it done, but should have had it done and recuperating at home. Still waiting, which is fine but scary to have open heart surgery and still can’t get my head around it. In the meantime, just working and sorting out things at home.

How are you coping with your construction?

[Sunnie2day in reply to Pinkysparkly]

My cardiologist is careful nowadays not to call it 'constriction' - but I think that's owing to my decades managing the pericarditis (I have a list of things I do, I've posted it at the end of this reply - feel free to copy-paste to a printable document you can hang on your fridge for offline reference). The main thing for me is avoiding heat-humidity-mould-too much salt, and knowing the signs the effusion is increasing.

Once I start to have 'fat fingers' that last all day, I ring the cardiologist and a prescription of Furosemide (diuretic) is sent to the chemist (Boots) who telephones when it's ready for pick-up.

Furosemide doesn't work for everyone but it definitely does for me. I do have a persistent 'minimal' effusion the Furosemide can't shake but when I'm feeling as though the effusion is increasing, Furosemide seems to work. For a few years when I'd ask for it, they wanted an echo but they don't do that any longer as they know that I know when I'm in trouble. I haven't had to have a drain in years.

Any road, follows below my personal management programme, tips I've accumulated over the years:

General tips for coping:

**Sleep with your upper body elevated - either several pillows stacked, bound, and laid lengthwise down the bed, 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 even though directing hot shower spray at your left side is nice for temporary pain relief, the humidity WILL cause the pain to increase soon after leaving the shower

**A hot water bottle laid along the left side of your rib cage can go a long way towards easing pain for a longer lasting bit of pain relief

**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 including ‘shiny skin’ - 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

[Pinkysparkly in reply to Sunnie2day]

Wow, that’s a lot but it shows you know your body!

I too am on Furosemide 40mg a day. Started on them back in August as fingers mainly on my right hand were showing signs of swelling on waking up and I had this gurgley feeling in my stomach that was I my relieved by me sleeping on my stomach. I was hardly getting any sleep, which then doesn’t help either with fluid retention. Since starting in the tablets it’s so much better. I too had to sleep on pillows but just got a new mattress which has helped so much, and I’ve ditched 2 of the pillows to see how I feel without them and it’s been ok. Very other night still waking at least once a night to use the loo.

Unfortunately, i do need to work on my bedtime routine of getting more sleep as I’m only getting about 5 hours but that’s been a problem since I was young.

Showers definitely help the pain and a hot water bottle but that’s mainly for my lower back.

You’re right about good days you tend to do more. I had some decorating to do but this weekend suffered with chest pains and exhaustion and still feeling it but I have to do it as no choice.

I’m a vegan so that helps but I try not to have too much salt (high blood pressure in my family) and also I don’t have a lot of sugar either and I don’t drink anymore.

Not sure about the “swinging fever” as I’m menopausal and hot/cold anyway. I was feeling really rough as in sick during some part of yesterday but I think that’s because I had something the night before quite late with wheat in it.

Your list has definitely given me some ideas and I will come back to them. Thank you so much.

[Pinkysparkly in reply to Scho1]

Hi there. Found the group. Thank you.

[Scho1 in reply to Pinkysparkly]

Brilliant. Sorry I didn't get back sooner. I'm currently at our caravan in mid Wales and the Internet is hit and miss. X

[jobristol]

Hi, I had a pericardiectomy back in 2012 due to constrictive pericarditis. My pericardium had become completely calcified. I recovered really well and felt so much better straight away after. I developed Atrial Fibrillation in 2016 which may have been caused by the constrictive pericarditis or possibly open heart surgery, but without the op I probably wouldn’t be here now! Please message me if you want any info.

[24865777]

HiYes had flu/covid about six months ago breathing didn’t get better told it was long covid and might take some time but it just got worse ,after hospital visit (five days) and every test possible I was told I had constrictive pericarditis saw mr Cale at castle hill hospital and booked in for pericardiectomy on 10/08/22 I’m a 49 male😩