Sorry for not updating my post until now. Its been a crazy few months. After a lot of tests my cardiologist along with a rheumatologist agree my pericarditis is not autoimmune in cause which is very good news. However....bad news is that my pericarditis has turned into the chronic and constrictive pericarditis. On my mri scan from last September I had no scarring/thickening at all but my scan from last month shows "significant" thickening and scarring. My doctor told me he has never seen scarring develop this quickly as it usually takes years or develop in someone soo young (I was 27 about to turn 28 when I got sick) This scarring is around my right ventricle wrapping around it. This is causing the right ventricle to bulge out into the left ventricle as it cannot expand/fill properly. This is lowers my cardiac output/blood pumping out which my heart tries to compensation for by beating faster. This in turn is causing my chest pain/palpitations, breathlessness, fainting spells etc. Apparently according to my cardiologist it is a "rare" complication but can happen following viral pericarditis. I feel soo special He is referring me to a surgeon in London to see if they will do a pericardietomy to remove the damaged pericardium.
So has anyone on here had a pericardiectomy or know someone who has??? I am really scared and cannot seem to find advice on the surgery from an actual patients perspective.
xx
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smck002
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Ticked the box to follow. I've had pericarditis and worry the 'ectomy is the next step - I SO understand your fear.
I can't find it now (of course) but when I first joined here a few weeks ago I did read a comment from someone who'd had the 'ectomy and said they felt great now.
I will have a look around and see if I xan find the post. I have heard that the surgery is very effective but I am still scared. I think it scares me as it is such a big operation. Its open heart surgery. But to be honest its got to be better than my current quality of life.
Thanks again for the message I will keep this post updated as my treatment continues.
If the link doesn't work, just use the wording to do a search. The discussion there is very helpful (but I still don't want to hear the consultant tell me he wants me to have it when I see him next month!).
I am not sure the reality of all of this has kicked in yet. My cardiologist is referring me to a surgeon first so need to wait and see now if the surgeon agrees that I need a pericardiectomy or not.
When I went into see the GP and she said she thinks it's heart failure, I'm pretty sure my eyeballs glazed over and rolled back in my head at the shock. Having had pericarditis several times since the late 90s I feel sure it's really that and not heart failure but I have to say I haven't really come to terms with the implications of either and so I fully understand where you are right now. Hopefully you'll be in with the consultant very soon and at least have a better idea of what you're looking at.
I'm booked to see the cardiologist the 18th of June and am finding the waiting very difficult. My GP suspected heart failure and fast tracked me - I've had the bloods, ecg, and last week an echocardiogram (and I was able to see the screen so I know there is considerable pericardial scarring), and now the cardiologist on the 18th.
Just about every single receptionist and tech I've met over the last few weeks says the same thing - 'Wow, fast-track star treatment!'...which only makes me worry I'm about to pop my clogs whilst fretting I won't have anything official until the 18th of June.
Truly I think the hardest part is the waiting - until/unless I find myself on a gurney prepped for surgery, then I know that will be the hardest part!
I am quite lucky with my job I get free medical insurance so a lot of my treatment has been faster than if I was going through the NHS. I was told when I was first really ill the wait list to even have a first appointment with a cardiologist was 18 weeks. Due to my health insurance I saw him less than 3 weeks. It made a massive difference. When I saw him for the second time to my get initial scan results he said if I had been waiting on the nhs I would of ended up in ITU before I even had my first appointment through.
Private care in my area is quite good but our NHS is as well so the recommendation from those 'who know' is go NHS Scotland as it's just as fast and quality of care is equal to the area private care. Too, I'm in a part of Scotland with better than average wait times (usually) and I think that makes a bit of a difference, plus our Rapid Access Chest Pain thing is very quick, comparatively speaking. But I think in my case I looked so close to keeling over when I went in to the GP they put an 'urgent' on my referrals.
I'm actually feeling much, much better than when I struggled into the GP that day, so much so I told the tech doing the echo I felt a little guilty about getting such a quick appointment. She politely agreed - until she got a look at my heart, then she stopped the comments about 'star treatment'.
May I ask, are you on a restricted salt diet? The second time I had pericarditis they told me to cut my sodium to no more than 1500mg per day (I was in the US at the time) and when I kept to that I did feel heaps better. Over here no-one has said anything about restricting sodium/salt and honestly I'm having some trouble converting the counts so I'm 'winging it' and trying to keep the salt down to less than 3g per day. Seems to help but I'm hoping the cardiologist will refer me to a nutritionist/dietician so I can get some real guidance.
I am not a salt restriction yet. Problem I have is that my blood pressure is very low. On average is about 95-100 systolic which makes me more likely to faint. This means for a while I was told to add a tiny amount of extra salt to my diet to help with low blood pressure.
To be honest I find it really hard to judge which foods have a high or low salt content in them.
Wow, that is low BP! Mine is 'normal' (120/90 usually).
If you've not been put on a restricted diet they must not think you need it (lucky you, so lucky ) When I was put on the low-sodium plan I was told in my case the salt was causing me to retain water and it was all going straight to my pericardium - everyone is different even when the diagnosis is technically the same, so what works for me specifically is going to be different for you.
Please do keep this updated so we know what the consultant says, and what you decide to do.
I will post as regularly as I can. I am thinking of setting up a youtube channel and post videos from before, during, after/recovery from the surgery. I havent quite decided yet though.
Try not to worry, I had constrictive pericarditis which took years to diagnose, a lot of damage done. Yes it is a serious operation with risks but when you have reached the point of life being hardly worth living you accept that risk. I was in my 74th year when I had the pericardiectomy at the Royal Brompton in London. It is a slow recovery but in so many ways much better due to non pleural effusion, etc. You are quite young and therefore in a good position to handle the surgery well. Embrace it and I feel sure you will recover well! Good luck.
Thank you A part of me is scared which is natural but the other part of me just wants it done so I can get started on the recovery and back to a normal life. I know it will take time to heal but at the moment my health just keeps getting worse as the scarring/thickening spreads.
Hi I had a pericardiectomy in June all went well. Did the 12 session cardiac rehab programme which helped immensely. Doing lots of brisk walking and have short jogs. All the best for your op.
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He is referring me to a surgeon in London to see if they will do a pericardietomy to remove the damaged pericardium. 
) When I was put on the low-sodium plan I was told in my case the salt was causing me to retain water and it was all going straight to my pericardium - everyone is different even when the diagnosis is technically the same, so what works for me specifically is going to be different for you. 
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