Please help ASAP pericarditis?

Posted , 7 users are following.

I'm 20, I had open heart surgery 4 months ago as I had a large ASD 4cm x 5cm and they rebuilt my septum with part of my pericardium.

Everything went so well, until 4 weeks ago, when I got rushed into hospital for severe pain in my shoulders, shallow breathing, sats between 89 - 91 and a pulse of 139 with a high temp. The pain was so intense that it made me vomit, I couldn't sit up, stand or lay back down without passing out.

They done a full blood count, and two large bottles of blood (can't remember the name of the blood test) an MRI and an echo cardiogram.

They found that I had an infection somewhere, and was my risk of a blood clot came back positive. They said this could have been because of the infection.

I was treated with anti inflamatories and IV antibiotics aswell as high doses of clexane injections. 3 days later I was fine and was discharged.

On Thursday this week. I woke shaking, freezing cold, I went to get up, the exact pain was back again. My temp was high, so I took anti inflamatories again. But by Friday morning the pain was so bad yet again I was screaming in pain unable to move. Again, took to hospital by ambulance. Tests came back that there was no infection this time. Yet the pain was even more severe than before even morphine didnt help it just knocked me out. They sent me home with tramadol and a course of anti biotics. 2 days later the pain is no better. I can breathe this time, my temp is fine, sats 96/97 and pulse 113. But the pain is unreal. Again tramadol not working. I have a pain under my breasts and in my scar, aswell as in my left shoulder that hurts constantly and when I move takes my breathe away.

Doctors are saying pericarditis, as if its nothing. But all I read is horror stories.

Please tell me they can treat this. There must be a medication that will take the pain away as it is so bad I've wished I was dead and even asked doctors to just put me to sleep so I don't have to suffer this pain any more. Someone please help. The doctors aren't 100% sure on the pericarditis, they don't know how to treat me so they pretty much just shunt me out the way. What do I do? I'm at my wits end, something MUST be able to take this pain away. Please help!

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  • Posted

    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.

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  • Posted

    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

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  • Posted

    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

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  • Posted

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

    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

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  • Posted

    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.
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