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Recurrent pericarditis after AVR

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  • 1.  Recurrent pericarditis after AVR

    Posted 03-29-2021 10:40


    I'm new this group. I had an AVR 12/11/2021
    and 3 weeks after I had my first pericarditis. Now I'm finishing my 3rd bout and I'm about to lose my mind. The pain is worse for me than the actual surgery. I'm 44, born with a bicuspid aortic valve, always exercised and did not have any other health concerns prior to surgery. I've been treated with Steroids the first time, Ibuprofen the second time and aspirin this time.
    the last echo showed EF 60% etc with no evidence of constriction.

    I'm tired, anxiety is in overdrive, depressed etc.
    Has anyone had this much trouble and lived to tell the tale?  

    Thanks in advance...

    gaydon jones
    winter springs

  • 2.  RE: Recurrent pericarditis after AVR
    Best Answer

    Posted 03-30-2021 01:36
    Hello Gaydon
    :) so just a quick tale of my adventure ....i have had aortic dissection at age 38 (one year ago). They have operated me urgently and fixed the most damaged piece (i still have aortic dissection of almost whole aorta). The "blow" of pressure that shot my aorta to shit also knocked out my aortic valve so i have mechanical one now. It's been a year now from operation (24.march is my second birthday). So i make once a year CT scan and see doctors and what not......the point is you will have chest pain for the rest of your life. Sometimes really bad sometimes light sometimes you will be ok. Start getting use to that. For psyhological effect you need to tackle it head on. Before i was worried for every little thing. Going into panic every time. My INR drops to 1.7 as they adjust the medicine i go to panic , i will die from blood cloths. Pain in my chest , instant heart attack omg omg i am going to die. Blood pressure drop i get "woozy" or get a little confused or "lost" omg it's a stroke. :) point of all of this is , you have been blessed that you are alive my friend. Before 20 years maybe medicine was "still not there" in order to save you. They have cut your chest open and repaired your heart (so to speak). I think we can expect some after pain from that. Keep in mind as i always do that if something was wrong the doctors would not have let you leave the hospital. Nobody will take a gamble with your life especially since you are young.Focus yourself on getting better , fisically and more important mentally. You are ok , take care of your self , listen to doctors take your medicine ,( you probably have some restrictions ) AND LIVE. You have a second chance to appreciate life :)
    Best of luck to you my friend and don't stress so much

    slobodan sokola
    technical supervisor

  • 3.  RE: Recurrent pericarditis after AVR

    Posted 04-03-2021 21:32

    Thanks for responding. You sure went through a lot.
    I'm trying to face this head on. It was a planned surgery (my choice with their recommendation) so I'm frustrated that I chose to do it then, sometimes at all. I haven't been able to work. I'm a nurse in a busy operating room and I'm required to lift patients etc.  

    Im just frustrated, but I know people go through worse.  I'm glad you're on the other side of most of yours. 

    take care,


    gaydon jones
    winter springs

  • 4.  RE: Recurrent pericarditis after AVR

    Posted 03-30-2021 10:18
    Welcome, Gaydon, and yes, I agree that you've had the shock of unanticipated big deal trouble.  And YOU are living to tell your tale.  There's no way to prepare for trouble of this magnitude and it's going to take longer than you expect to get on your feet again.  Fatigue, anxiety and depression are common themes among us all even though we are months and years further into recovery.  Your last EF and no signs of obstruction verify you are in a good place to be; pericarditis bouts may be slowing, be that as it may, you are getting help when it happens.  Atrial fibrillation, you may know, is also an annoying persistence after effect for some people.  For me, I have unstable angina which I can expect for the duration since I have areas of unstentable poor perfusion. Others are annoyed by other nuisance after-effects.

    Take advantage of any and all resources available: cardiac rehab, counseling, diet therapy, stress management techniques, meditation, even aroma therapy. I'm burning a vanilla candle as we speak because the smell reminds me of good days in the kitchen. As a retired nurse I've been skeptical of complementary therapies but another nurse recommended lavender oil and I've found it helps with anxiety and insomnia. Find a way to breath the aroma. We nurses know quite a bit about procedures and adverse effects; hard to turn that off.  But you can and must. Decide to be happy that you are alive today.  I remind myself of this reality every day and I am happy.

    And let us know how you are doing......

    Doris Edwards
    Retired RN
    Dublin, Ohio

  • 5.  RE: Recurrent pericarditis after AVR

    Posted 03-30-2021 14:02
    March 30, 2021
    Steven Livingston
    South Windsor , CT

    Gaydon Jones
    I,m a pericarditis graduate/surviver of 50 years. I came down with pericarditis in March 1970. I was 24 years old. I had 4 more episodes, so that is 5 times total. Back in 1970 the first treatment was aspirin and bed-rest. I spent a month in the hospital with 2 weeks of that in ICU. I remember my doctor telling me “of all the heart ailments you could get, you got the best one”. I was back in the hospital 4 more times. The subsequent treatments were steroids and bed-rest and after the third occurrence there was mention of surgery to have my pericardium removed. I then went to Boston for a second opinion. The cardiologist and surgeon agreed with everything that was done so far. The only difference the Boston doctors came up with was for me to go back to doing whatever I was doing before pericarditis because pericarditis can reoccur wether I was active or inactive. They said pericarditis can reoccur many times and then it can stop reoccurring but there was no way to know how and when that will happen. They also said if I had another occurrence they recommend having the pericardium removed and if I wanted it done in Boston they would do it. Well as it turned out I had another occurrence in December 1970 and I went to Boston and had OHS and my pericardium was removed. There have been many advances in the treatment of pericarditis. I have heard todays treatment is to cut a hole in the pericardium allowing fluid to drain and dissipate.

    Steven Livingston
    MH Chapter 9, Greater Hartford
    Sent from my iPad

  • 6.  RE: Recurrent pericarditis after AVR

    Posted 04-03-2021 07:51
    Hello Gaydon,
    I have also been treated for an Auto Immune onset of Pericarditis unrelated to a Heart Malady/Disease valve issue like yours at the Mayo Clinic of Jacksonville, FL.   The Excruciating Pain for me was worse than giving Birth to my Babies and I was treated with a Non-Steroidal Anti-Inflammatory Medicine that is called Indomethacine(Imdometacin)
    I was told that I would need to be patient with the Drug as it might take some time 7-10 days (for me 2-3 weeks) to make an effect on the Infection that had Invaded my Hearts Pericardium.  Included in the diagnosis were some very interesting Life Habits which would affect the Drugs outcome even better.
    Firstly I would need to brush my teeth 3 X a Day (I was a 2X a Day Brusher Prior) using a Whitening Toothpaste and not to swallow as I was Brushing my Teeth but to rinse thoroughly and completely expelling the solution of Toothpaste and Saliva as I Brushed.  I was to NEVER Refill another H20 Bottle as long as I lived.  Something I did regularly from our Fridges Filtered H20 Spicot.
    Secondly Drinking only Fresh Room Temperature Berkey Drip or Bottled H20 that included Alkaline in it's chemical make up.  H20 Bottles that are drank from and then left in a vehicle or a bag for more than a couple of hours are prone to Bacterial & Viral contaminations that are then ingested when we drink the water unknowingly.
    Thirdly every Fruit or Vegetable or Piece of Meat I would ever eat again had to be rinsed in a White Vinegar solution to remove the Field Contaminates/Insecticide Sprays and Slaughter house contaminates that might remain on the food item.
    Finally I was to wash my Hands or use Hand Sanitizer regularly up to 10 times a day.(this was way Pre-China Virus) The specific type of Infection was identified in Bloodwork as a common food/waterborne bacteria that I was unable to fight off or counteract with my low white blood cell count due to my Auto-Immune disorder.
    After the Mystery was solved, the Medicine Indomethacin worked like a charm and I never had Pericarditis again, and now I am so glad to be able to share my unfortunate Pericarditis story with you in hopes that possibly the Non-Steroidal Anti-Inflammatory Drug that helped me could quite possibly help you also . . .            Keep me posted !   0 : )

    Robin Gage
    Board Member
    Heart Failure Society of America
    Lakeland FL