Leslie's Journal

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

Well, folks, I'm home and 12 days post op. All I can say is wow, what a journey! And thank God for all of the innovative and courageous surgeons and researchers who have made these valve replacement surgeries a common, if traumatic, routine surgery. It ends up that I had a unicuspid aortic valve which seems so crazy to me. Dr. Svensson and his surgical team were phenomenal, the nursing staff, while busy were always kind and took good care of me. The surgery was a little less than three hours long and the only complication, if you can call it that, was transient afibrillation for about 24 hours starting day 3, which was resolved through the quick action of the step down unity team. A few things that were unexpected were that my taste and smell has completely gone haywire and I was basically prone with eyes closed the entire time I was in the hospital, except when going to the bathroom, etc. I know that this was related to the pain medication usage, but I had expected to be more 'with it.' As for the taste/smell issue, I'm still really struggling with this. Everything tastes different than I remember, and not in a good way AND I can't eat anything with sugar or that tastes sweet (like fruit) because my mouth explodes with a horrible overwhelming taste. I guess I'll be cutting back on dessert for a while. The taste issue really impacted my ability to eat anything and basically had only one or two bites of food per day. As a result I was taking a lot of oral medications on an empty stomach so the vicious cycle of nausea and not eating didn't resolve until my 2nd day home, yesterday. I'll bet that I ate less than 500 calories the entire 6 day stay in the hospital. So, yes, I've lost a few pounds but I do NOT recommend letting this get out in front of you. I didn't realize what was going on until about day 5.5 and so did my best to try to eat but of course it never coincided with when meds were brought in. Gratefully, I had the wisdom to start yesterday by eating some scrambled eggs before taking any medicine in the morning and this really turned things around. For some reason they tasted good, were warm and inviting and by the end of the day I had eaten three meals. I am told that the taste and smell issue should resolve (no indication of timing) and I certainly hope it happens soon. One person suggested that it was a carry over from the taste and smell issues that I was having early in the month due to late Dec bout with Covid. Either way, it's one of the minor frustrations following surgery. Also, I was so looking forward to being in my own bed and starting to get some real sleep, but sadly, sleep has been elusive. I think we've all been warned that sleep issues are very common post surgery, but I was really hoping that somehow I would be the exception... nope, but perhaps you'll be one of the lucky ones. All in all, I can only say that I am grateful and blessed to have had this surgery. There's nothing fun or easy about it, but just knowing that I will now be here for my grandson, Felix, for a little while longer is the best thing ever. Good luck to those of you anticipating your surgery. It will be okay. Try to be grateful through the entire process, and as I learned, remembering that there are many others who are dealing with a lot more than this can really bring perspective. In the big scheme of things, we are all very fortunate to have this surgical option. Thank you to all of you who reached out with prayers, encouragement and support. We're certainly all in this together. Leslie

Hello everyone, First of all, I want to let those who are having surgery this week know that you're in my prayers and that we're here for you. I am grateful that you will be in recovery mode and the long anxious waiting for the surgery will be behind you soon. As the days come and go I find that I am both weirdly excited to have my heart fixed, grateful for the pioneers in cardiothoracic procedures, and anxious about what lies ahead. It's so good to know that we're all going through this together and that there's light and opportunity for joy and health ahead. My surgery is now scheduled for Jan 24th and gratefully we are just getting over having Covid, so at least that is behind us for now. One of the little games that I am playing is a form of denial or avoidance in that I am not reading much about the surgery/procedure or the problems that could be coming my way because it seems to be the only way that I can cope right now. It's just overwhelming and I tend to catastrophize. I have friends who have said, 'why are you worried? This is such a common procedure! You have nothing to be afraid of...' and others who more compassionately say that they understand my feelings of anxiety and that I'm not being a hypochondriac for having some fear about it. It's so strange to watch how each person in my life is dealing with this differently. I am trying to be loving and kind and understanding of each person's response and also trying to not be hard on myself for my feelings heading into this. In one way, it's really interesting to observe my own emotional and psychological journey and the rollercoaster of the experience. I hope that coming out of all of this that I will be a more present and compassionate daughter, sister, friend, wife, colleague and mom. I don't believe that my story is done being written, so hopefully the upcoming chapters will be rich with joy, wisdom, a greater love for the people in my life as a result of this life changing experience. Anyway, thanks for reading, and for just being here... it's easier and better knowing that we're in this together. Leslie

I'm newly diagnosed and have since come to learn more and more about familial problems that could impact the direction and timing for my valve surgery. I am struggling with anxiety, which has never been a problem for me in the past and wow, it's been intense. To be fair, I recently went through a traumatic experience with a loved one who passed away suddenly and then suffered a serious panic attack on my flight home from that event. The next panic attack always feel right around the corner, and now with this diagnosis I'm worrying about the impact of the panic attacks on my heart. It's just a lot to process - the grief of loss, the grief of the diagnosis and the fear and anxiety that is coming along with it. I feel like a crazy person, though I've never been in this state before. Hoping and praying that the anxiety will smooth out with more information. I wish you all well and appreciate knowing that we're all going through this together. Leslie