Pericarditis

[Kimkat]

I’m so concerned, my son who is 41 has been taken into hospital with chest pains that started at 1am. The ambulance came and they have taken him into the cardiac unit. He’s had bloods and a chest X-ray also a covid test but it’s too soon for the results yet. The paramedics said that the initial ecg indicated that he has had a HA but the doctor isn’t too sure but has said that he could have inflammation around the heart! Could this be pericarditis? And could the inflammation be due to possibly covid? Thanks in advance.

[Rose54]

Hi Hes in the best place at present

Hope it all turns out ok

try not to wory

[Lezzers]

Hi Kimkat

My husband has had inflammation around the heart 3 times and has never had pericarditis, hopefully this will be the case with your son.

Wishing your son a full & speedy recovery

[Kimkat in reply to Lezzers]

Thank you x

[JJL15]

Hi there, I have had pericarditis twice which I was told inflammation of the sac that protects the heart. I could hardly breathe and pain in my shoulder. My bloods showed proteins that’s released when you have a heart attack. They monitored me closely and I started to feel better after a week in hospital both times. I was early pregnant too when I had it. I hope your son feels better soon. Just make sure he rests up

[Kimkat in reply to JJL15]

Thank you for that, I did look on line and it said that inflammation around the heart can be caused by a virus or bacteria that made me think of covid. I’m just concerned because there is heart disease in our family on my Dads side but I don’t think that any of them had problems at such a young age. There’s still no news of his bloods yet but they had told him that he will be staying in overnight at least.

[JJL15 in reply to Kimkat]

I was never told why I had pericarditis but my cardiologist did say to me once before it’s because I’ve had previous AVR surgery so might by why. It’s very frightening but he’s in the best place to keep an eye on him. I was on paracetamol until pain subsided. I imagine they will do an echo on his heart, when I was in I was transferred to Hammersmith hospital for an MRI of the heart. Maybe they will do this to check it over. Fingers crossed you get some good news and he can go home and rest - wishing him well

[Kimkat in reply to JJL15]

He still hasn’t had any results yet so I’m hoping that no news is good news and he’s just had more pain meds but he can’t sleep. I’ve tried to reassure him but it’s easy to say I suppose. I think he does appreciate that he’s in the best place but it’s hard with this covid because he’s more worried about that. Thanks again for your input, much appreciated.

[Anxiousanni]

Hi firstly I hope he is ok ? I went to hospital on two occasions one a ha was mention thank goodness it wasn’t .bit I was told I had pericarditis too they were adamant it was that but after an appointment with the specialist he said he def did not think it was that at all .maybe costocondritus more likely .hopefully he now get it sorted and find the cause it’s not nice I know as I have been in a couple of times with it all very frightening.hope you hear soon let us know the out come Regards

[Kimkat in reply to Anxiousanni]

They have mentioned to him that it could be pericarditis but apparently his blood tests haven’t come back yet, which I find amazing! When I was taken in which chest pains my tests were back within a few hours, which ruled out a HA, all this was before covid of course and I understand that they are extremely busy but his bloods were done 18 hours ago. They have also taken more bloods to do an antibody test which I presume is for covid? His covid test has come back negative thank goodness. Thank you for your reply.

[Kimkat in reply to Anxiousanni]

I maybe should mention that the pain he has is in the chest, back, shoulder, arm and he felt constriction in his neck/throat, as if he had something blocked in his throat.

[Sunnie2day]

I have recurrent pericarditis as a consequence of Dengue Fever Stage2 back in the mid-1990s - pericarditis can be caused by infection, inflammation, leaking valves, impact to the chest (via blow OR heart surgery), exposure to mould, and sometimes it just happens with no discernable reason (termed 'idiopathic'). There are more and more reported cases of the condition in patients who are recovering from Covid.

The gold standard tests for an acute case of pericarditis are: chest x-ray or echocardiogram to see if the pericardial sac shows signs of inflammation and/or effusion (presence of excess fluid in the sac).

Also very helpful is a 'chest listen' done with a stethoscope, the medic doing the listen needs to have been specially trained to hear 'pericardial friction rub' sound - the presence and 'depth' of the sound is indicative of an active case with effusion. Lack of sound indicates the beginning of recovery from the acute flare.

Standard treatment of an acute flare of pericarditis is a course of Colchicine, a gout drug that also works very nicely for an acute pericarditis case. The patient must be monitored carefully for signs of intolerance - the side effects are not nice and some patients do not tolerate the drug well (like me, I can't use it so have to go on aspirin which I tolerate very well). Also helpful if there is a fair amount of effusion is a course of a diuretic - usually a 5-15 day course of Furosemide (cheap and cheerful, just don't get too far from the WC).

Depending on any effusion and the amount of it, most patients in hospital are released to home, sadly as pericarditis isn't all that well understood in the UK (owing to it being relatively rare) the patient goes home with little to no guidance as to recovery.

If your son is definitively diagnosed as having an acute case of pericarditis, he should begin to have full recovery at around three months from onset - yes, it takes that long to fully recover and some of us take much longer. Pericarditis is not a nice condition to cope with for patient and loved ones. It is debilitating and recovery is difficult ('good days' lead to doing too much which leads to several 'bad days', the patient begins to feel he/she is never really going to get their life back and can become frustrated and frankly grumpy).

Please update us as you all go on.

[Kimkat]

Thank you for your information Sunnie2day it is most helpful. My Dads side of the family have history of heart problems on the male side, so when I saw my son yesterday I feared the worse and have been beside myself with worry, especially as I too have a pacemaker, it’s a horrible feeling to have that you may have passed on a condition to your kids and the way things are with the nhs being overwhelmed with this pandemic is an added concern. I try not to scour the Internet for info but it’s too tempting. He’s had 5 ecgs already but hasn’t been told anything and his bloods were taken almost 19 hours ago with still no results, so I’m hoping that it’s not a heart attack at his age. Would he expect to have a heart scan at some point? He’s had a chest X-ray and covid test which came back negative but apparently that’s not conclusive if you read other people’s experiences of contracting it. He’s also had bloods taken this morning for antibodies.

[Sunnie2day in reply to Kimkat]

A scan at this point depends on what the medics saw on the chest x-ray. If they saw 'shadows' or 'bright spots' on the x-ray they would ordinarily send him for an echocardiogram - if they don't send him for the scan today or tomorrow you need to ask if they are planning to as inexperienced with the condition medics don't always think of an echo.

It really has been a rare condition in the UK so many medics have little to no experience with it - including the use of ECG as not helpful with pericarditis, I was in the middle of an exceptionally acute flare spring of 2019 and had to insist they send me for a chest x-ray when the ECG (resting and stress on a treadmill) didn't give them the expected results. An ECG is a very useful tool but someone can be in a pericarditis condition and have 'perfectly normal' readings on an ECG.

At the first ECGs spring 2019 I knew I had effusion from previous experiences with acute flares - and I knew without treatment I would very soon progress to cardiac tamponade (where the sac becomes so full of fluid it squeezes the heart. It is a life-threatening condition). They were reluctant to do that so I went private - was seen the next day. The cardiologist took one listen of my chest and sent me to x-ray as urgent...and of course once they saw the x-ray they sent me straight to an echo that showed a rather full pericardial sac. It took me close to a year to clear that flare, btw.

Also ask if they're going to try him on Colchicine but only if they definitively diagnose an acute flare of pericarditis. Also, again, Furosemide is very helpful, especially if Colchicine turns out to be intolerable.

If it helps any at all, a family history of heart conditions hasn't been revealed to be a pre-disposing factor for pericarditis. But once pericarditis has been discovered in a patient with a family history of heart conditions, it is important all investigation is done for both the pericarditis and for the familial heart conditions if those investigations haven't already been done at the GP level where the family history should have been noted and followed up.

My son is 38 (soon to be 39) - as a mum I can all too well imagine what worries you're enduring the now. Please believe me, one worry you really can let go of now is that somehow your son has developed pericarditis owing to your family history.

Please do keep us updated on how you all get on.

ETA: consulting Dr Google and his snake oil salesmen minions is usually not advised - but if you do Google, only click on credible sites like UK based NHS, BHF, and up here in Scotland Chest, Heart, Stroke.

US based sites are actually much more informative about the condition as it is endemic there - look for The Mayo Clinic, The Cleveland Clinic, and Baylor (Texas) for your best information after the UK sites. Also Harvard Medical, Princeton Medical, and Johns Hopkins.

[Kimkat]

Again thank you. He’s not being told anything at the moment so I’m assuming that once the doctor does the ward rounds he will give him more information. All we know is that he is in the cardiac unit we don’t even know what ward he is on. It’s impossible to contact anyone with it being so chaotic and our hospital ambulances yesterday declared a state of emergency. It took them almost 90 minutes to arrive after the initial call. I will pass on some of the info and tell my son to ask questions. He’s never really had any experience of being in hospital so I can only imagine that he’s not asking anything at the moment, I think that only comes with multiple admittance into hospital.

[Sunnie2day in reply to Kimkat]

How old is he?

[Kimkat in reply to Sunnie2day]

He will be 42 in May.

[Sunnie2day in reply to Kimkat]

I sometimes think I worry much more about my son now than I did when he was younger and still living at home.

Have you heard anything yet about what the medics are saying and doing?

[Kimkat in reply to Sunnie2day]

He has been discharged from hospital with pericarditis, he’s been given ibuprofen and paracetamol for the pain and omeprazole to protect his stomach. No instructions or anything so he’s going to try and speak to the GP tomorrow. He’s still in a lot of discomfort but looking forward to sleeping in his own bed tonight, so fingers crossed he will be ok. There was nothing to suggest that he had a heart attack which is a relief but I’m just a bit confused that they have sent him home without a word of what to expect. And yes I feel the same as you, I worry more now than when he was younger, I suspect most Mums feel the same.

[Sunnie2day in reply to Kimkat]

Thank-you for the update. This BHF page on pericarditis might be helpful for your son to have a look over:

bhf.org.uk/informationsuppo...

Hopefully he'll have an uneventful recovery. I'm surprised they didn't send him home with a sack full of either Colchicine or Furosemide, and disappointed on his behalf they sent him home without any guidance towards helping recovery. Hopefully the following will help, please feel free to copy and paste to email to him or to print it out to 'snail-mail' him:

***He needs to avoid heat and humidity (so no long hot showers), mould, and trying to do too much for the next few weeks at least.

***Also, he will be much more comfortable if he lays two pillows (one atop the other) lengthwise down the bed so that he is sleeping with his upper body elevated. If he is a side-sleeper he needs to sleep on his right side, not on his left. Helps with pain and lessens body weight on the pericardium.

***He needs to be alert to worsening pain on lying down (reclining), and especially alert to any coughing whilst reclined - coughing whilst sleeping or reclining is an indication of increasing pericardial effusion and a possible signal of a life threatening condition (cardiac tamponade).

Please keep us updated on how he gets on now he's got a diagnosis.

[Kimkat in reply to Sunnie2day]

Thank you for this I will forward it on to him, I’ll read it also. I did read his discharge notes and it mention that there was no effusion, so I’m assuming that’s a good thing. And I will keep you updated.

[Sunnie2day in reply to Kimkat]

No effusion is a spectacularly good thing! It also explains why they sent him with only pain relief. Now the hard part after being alert to signs it's worsening is for him to keep from overdoing on days he wakes up pain-free and feeling himself again. Recovery takes time even without effusion - but no effusion is wonderful

[Kimkat in reply to Sunnie2day]

Just been in touch with my son and he’s managed a relatively good sleep 🙏🏼He took on board your advice and found a comfortable way to sleep with two pillows and a V pillow. Just feel so disappointed with the nhs that he wasn’t given any guidance whatsoever, not even verbally by anyone, he says that sometimes the pain is the same as it was when he was taken in but in general he can get comfortable and reduce it. I noticed that the heart surgeon that signed his discharge notes was the same one that fitted my pacemaker, I wasn’t too impressed with her at the time, bit of a misery and didn’t say a lot. Thank goodness for this site and people like yourself otherwise I would be beside myself.

[Sunnie2day in reply to Kimkat]

Pericarditis is not something most medics have seen here so they have little to no experience with it - little to no experience means they'd rather discharge patients with no guidance to avoid giving information that 'isn't helpful'. It's rare for pericarditis to progress to a point needing medical intervention - most people tell themselves 'Oh it's just a heavy cold', decide 'not to bother the GP' and so are never diagnosed.

It's only when the chest pain becomes alarming or the other symptoms like shortness of breath and extreme fatigue that patients present and are found to have it - the chest pain and other symptoms perfectly mimic heart attack when the case is severe like your son's and that's when people go to the doctor or ring for an ambulance in the middle of the night.

Increasing numbers of Covid survivors are being found to have a post-covid case of pericarditis so medics are going to be learning much more about the condition over the next few years - doesn't help your son now though so it's good you can come here and to other sources (like the US sites I mentioned earlier) to find credible information.

If his case lingers (and it might, pericarditis bad enough to send someone to hospital tends to linger), there is a Facebook group I understand to be very helpful - I don't have a link to it (I don't use FB), with luck someone following here will post it for you.

Hopefully he'll recover uneventfully and I'm glad he was able to get some rest last night

[Sunnie2day]

Update, Kimkat? How is your son doing now it's been a bit more than a fortnight since diagnosis?

[Kimkat in reply to Sunnie2day]

Hi Sunnie2day and thank you for thinking of him. He has generally been ok but has had a couple of flare ups, so contacted the gp who has given him cocodamol and naproxen. He has just told me that he’s not feeling that good today but he did a fair bit of housework yesterday, helping his girlfriend out, so not sure whether that has affected him?

[Sunnie2day in reply to Kimkat]

One of the biggest problems when recovering from an acute case of pericarditis is 'good days' leading to the patient thinking he/she can do more on a good day. The problem is using a 'good day' almost always leads to 1-5 'bad days'.

But forcing oneself to not do more on a 'good day' is next to impossible, it takes incredible strength of will to stay with the 'don't overdo' programme. The frustration of having to keep from doing a little more on a good day is not fun, either.

Hopefully your son will soon have more good days than bad - once he's gone a full week with only good days (during which he must be careful not to try increasing activity), then he can very cautiously add one small increase in activity, adding one more bit of physical activity on an every other day schedule.

The 'every other day' schedule is to make sure the one added thing on a good day doesn't lead to a bad day.

Recovery from pericarditis would be so much better accomplished if pericardial specialists would put their heads together and come up with a published comprehensive guide to recovery! But sadly even in countries where the condition is not as rare as it is here in the UK, the scant published material regarding recovery just isn't enough for most of us, we've got to the point we copy and paste everything we discover to a folder on our computers.

I've printed quite a bit of what I've found out over the years, and my personal lists of 'how to get through another acute flare' journals. I'm not the only one who has done this, I got the idea to start a 3-ring binder (lol, complete with index tabs and a table of contents!) from one of my fellow pericarditis patients in Guatemala.

Hopefully your son's pericarditis will finally resolve without becoming recurrent pericarditis and he'll never need to start a 3-ring of his own.

Please keep us updated on his progress.

[Sunnie2day]

Hiya, Kimkat, it's been a little over two months now, how is your son doing?

[Kimkat in reply to Sunnie2day]

Very nice of you to ask. He’s actually doing really well, touch wood. He had a couple of ‘iffy’ days where he felt as if it was coming back but rested himself, took a painkiller or two and hasn’t been bothered with it since. Although I think it have him a bit of a shock as he embarked on a calorie counting eating plan, watching what he’s been eating and he’s lost almost a stone. He’s not at all a big guy, quite slim anyway but had started to see his tummy protruding more than he liked, so he got himself off his sofa and started walking around 5/6k a day and teamed with his diet, he’s done really well. Think I need to take a leaf out of his book 😄

[Sunnie2day in reply to Kimkat]

Great news, thank-you for the update! And good on him for 'getting moving', a good diet and return to fitness really helps after a bout of pericarditis including keeping another bout at bay.

Nice giggle about you and a leaf from his book but are you located close enough to him to join him a few times a week on the walking programme?

[Kimkat in reply to Sunnie2day]

He literally lives a 2-3 minute walk from me and we are near the promenade so we do walk together sometimes but he works quite a lot of hours from home now so tends to go out when it suits him. Hubby and I do get out as much as the weather permits but I do do regular stretches for all of my achy bits 😄 and try not to be too sedentary. Also I’ll be training for my next 10k walk/run soon which I’m assuming will be another virtual one as it doesn’t look as if we will be out of lockdown any time soon the way things are going.