Leslie's Posts

Post Pericardiotomy Syndrome / Recurrent Pericarditis Hello all. I thought it would be a good idea to check back in with an update. I had AVR on Jan 24, 2022 (almost 6 months ago) and have since experienced several subsequent hospital stays due to post pericardiotomy syndrome and recurrent pericarditis. The first episode happened about 3 weeks post op. I was sitting in my recliner and suddenly experienced severe rigors (rigors are episodes in which your temperature rises, often quite quickly, while you have severe shivering with the chills). I also had a number of large, itchy hives on the back of my neck and on my hands. This can be quite dramatic and in my case it was accompanied by severe 'heart pain' which radiated to my back left shoulder area. For whatever reason, I assumed that by telling the ER team that I had just had open heart surgery they would automatically contact cardiology. Four days later, after MANY tests (primarily blood work) and consults with Infectious disease, I learned that they never consulted a cardiologist. It was the ID physician who made the diagnosis of post pericardiotomy syndrome. I take responsibility for not providing them with my surgeon's information, or my cardiologist's name, having incorrectly assumed everything was 'in my chart.' Once cardiology came in (day 4 - 37 needle sticks later) they confirmed the PPS diagnosis accompanied by pericarditis, and in my case pericardial and pulmonary (both lungs) effusions. I was in rough shape. I was placed on Colchicine once daily and ibuprofen for the inflammation 400mg every 6-8 hours and told to rest. No problem there. I had no energy at all and the colchicine was very hard on the stomach. A week later, I had another severe pain episode that landed me back in the hospital overnight with morphine needed to get the pain under control initially. Apparently I wasn't taking enough anti-inflammatory meds. I was put on steroids + Colchicine + 600mg Ibuprofen every 8 hours, and Tramadol as needed. Once again, the pain flared a few weeks later and Ibuprofen was increased to 800mg every 6 hours + tramadol in between. It just seemed impossible to get the inflammation under control. Inflammation blood markers were quite elevated. In time, with persistent pain that was being fairly well managed, it was determined that we needed to add a new treatment for pericarditis which is called Arcalyst. This is a once weekly injection and an immunosuppressant. It seems to have done the trick, though it appears that I will be on this medication for the foreseeable future. I have been back to work since May 9th but wish I had taken a little more time off. The moral of the story is to make sure that you don't assume things when it comes to your care. It's possible that if I had been diagnosed and treated by a cardiologist properly during that first episode, things would have been resolved much more quickly. I can't complain... from a heart valve point of view, I am doing very well, and I am confident that the pericarditis will be fully resolved in the weeks and months ahead. It's a small price to pay for a heart that functions well for the first time in a long time. Send me a message if you want to chat about your experience with pericarditis or Post Pericardiotomy syndrome! One more note... Dr. Allan Klein at the Cleveland Clinic is now managing my pericarditis - he sees 3000 people a year with this issue. If you have recurrent pericarditis, I urge you to contact his office for a consultation, at a minimum. Take care everyone, we've got this! Leslie