Please help ASAP pericarditis?

Hi,

I am so glad I read your post and hopefully I can give you a little comfort to know that I have been through it too! I was 23 when it was discovered I had an ASD, I also had open heart surgery with the pericardium tissue used to patch up the hole. Mine too was a large 4/4.5cm hole! What it looks like you had post surgery was Dressler's Syndrome, effectively Pericarditis post open-heart. It's an awful experience because you feel like your chest is collapsing and you can't breathe. I too had this after surgery. (I am now 35)

Don't despair though because it will pass and..your post was in Feb, so hopefully has got much better?!

I am afraid if it is Pericarditis then nothing will make it stop, it has to run its course, But there are medications and NSAIDs to help lessen the pains.

I, unfortunately, suffer recurrent pericarditis these episodes have often been incredibly, unbearably painful but they are getting milder now (though at times still debilitating).

You may be lucky though and not have any more episodes.

Remember you have been through massive surgery and your body is recovering..this takes time. Always get checked by the doctors/hospital when you have onset of this pain because it often mimics a heart attack and is also quite similar to those symptoms experienced with a blood clot...so it is vital to know that these are ruled out...the doctors won't mind seeing you. Also, anxiety worsens symptoms so if there is anything you can do to reassure yourself that you will be ok this greatly helps to keep pain levels under control.

I have a blog that I set up to deal with the recurrences and also it acts as a great diary!

Please get in contact if you need any support at all and if you continue to get flares

Hope you are much better now!

Emis Moderator comment: I have removed the link to the blog, if any user wants the details please use the private messaging service.

I am very interested in this discussion since my 33 year old daughter is going to surgery in early feb to have a 35 mm hole ASD repaired. I am a concerned father. How do I see the blog ie how do I private message?

I do hope yo both had a good outcome and full recovery

kevin

Hi Kevin,

when I look back to the time I had surgery in 2002 I think whilst it came as huge shock and I was obviously worried, in many ways it was harder for the family around me to deal with. Remember, an ASD repair is one of the most common heart operations so the surgeons are very used to it. I have been unlucky in having relapsing pericarditis. I had Dressler's shortly after surgery which is quite common, but I recovered and it wasn't until pregnancy a couple of years later that I began to suffer pericarditis.

I thought I was old enough when my ASD was discovered but your daughter is ten years older! Did you always know she had this or has it been discovered recently?

In all likelihood your daughter will go through the surgery, recover and lead a very healthy life, she will be fitter than she ever has been and will be able to be as active (and probably more) than before. You shouldn't let yourself worry about possible conditions until they arise.

I do wish though that I had been warned about the possibility of pericarditis but there wasn't any option about having the surgery. It will be important to go to the cardiologist with questions at the ready about possible long-term risks firstly from the effects of having a heart condition from birth and also as a consequence of surgery.

I hope your daughter's surgery is successful and that she makes a full recovery.

I am not sure how to pm, going to look now, but in the meantime if you search 'recurrent pericarditis' in blogs then you will probably find mine

Best wishes

Helen

"... ie how do I private message?" Click the orange 'Message' button under helena05s name and a thing will appear

Hi, hopefully youl get to read this....

Mainly just looking for some advice if you have any... Here's my story...

I'm 24, sept just gone I had tonsillitis, I started having really bad chest pains I couldn't breath and had a weird pain in my arms, I went into hospital where at first they just thought maybe I was allergic to penicillin, after a number of tests I was transferred to a specialist heart hosp, after all my tests and MRI scan it was confirmed that the tonsillitis had resulted in me having myo and pericarditis, the whole experience was such a shock to me, I wasn't even allowed to walk to the toilet, I was released from hospital after nearly two weeks and have been on pills ever since, I have an MRI check up scan next week and have only really started thinking about the whole thing and realised, I actually don't really know after deal about it, I no what it is and why it happened but I don't actually no if it's a long term thing or if il be okay, if anything in my life will be affected by it. Isit gone? Can it come back? My partner and I would like to start trying for a baby, in the back of my head I'm worrying about all of this. Should it be an issue?!? I'm slightly clueless tbh and would love .... Something, anything, someone to talk to.....

Thanks, and I hope to hear from someone

You can talk to the British Heart a Foundation or the Cardiomyopathy Association, you will find their details online, they both have heart nurses you can talk to.