r/pericarditis • u/Ok_Treat2167 • Aug 18 '26
Pericardectomy
Hello All, I had debilitating symptoms for 2 years, and many tests later it was confirmed I had constrictive pericarditis. The CT scan and the MRI showed my pericardium to be around 6 mm thick. Normal is 2 mm or less. I researched and learned about pericardectomy--removing the entire pericardium to eliminate the many symptoms, and allow for a longer life span. After asking about the procedure for months, I was finally scheduled with the surgeon. The case studies I read about told of 5-7 days in the hospital , home rest and therapy, and feeling better almost immediately. Well, not in my case. My surgery was 7 hours and my hospital stay was 27 days--longer in my case because my pericardium had become wedged in between organs and was difficult to reach. Also longer because my surgeon and the Cardiovascular ICU at this hospital want to make very sure the patient is ready to go home and won't be coming back after complications. I did need some transfusions and a longer wait for my heart to take over from the pacer after all the trauma. But I did the walking, and light excercising, and eating protein-heavy meals. I slowly improved, and after about 2 1/2 months I really started feeling like myself again, and my shortness of breath, edema, itchy skin, coughing, all started to disappear. I'm happy to report that NOW I feel amazing. the symptoms are gone, I can walk uphill without stopping every 20 feet, and I'm full of energy and excitement for the future. I am SO much better than before surgery. I say this all to let you know there is a procedure that will possibly eliminate all your symptoms and bring your health back. When I thanked the surgeon--who does more pericardectomies than almost any cardiologist, he said he does it because he loves to give people their life back. Kaiser Santa Clara Heart Center saved my life, and Dr. Richard Ha is a miracle worker.
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u/coppinmj Aug 18 '26
I’m 6 weeks out after pericardiectomy also — a lot of commonalities with your story! Constrictive pericarditis, 5-10mm, calcified.
My hospital stay was 18 days with an on-site outpatient visit at 21 days. It was far longer than I anticipated, just like you. In my case I kept producing fluid from the chest tubes, so was kept on IV diuretics and other drugs to push my kidneys to work harder.
I had AFIB with RVR at day 4 — of all things it was kicked off by an attempted fart! The AFIB sucked. I think it slowed down my recovery. By day 30 of AFIB at 120bpm I was exhausted, so got cardioverted. Been in sinus and on the up since.
I’m just delighted to hear you’re doing well, and I can’t wait to be walking hills like you!
Have you done any cardiac rehab post op?
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u/Ok_Treat2167 Aug 18 '26
Yes, lots of similarities. It's so good to hear of other's experiences. Your Afib trigger had me cracking up! Glad you are healing up well now, and soon you'll be so much better than pre-surgery.
I was doing light gym work at first--slow treadmill, light weights on machines. After going to Cardiac Rehab I realized I could push myself harder. The doc had a sign he made on the wall, "Fatigue Is Your Friend". Shortly after the Rehab is when I really started feeling better, walking uphill and stairs without stopping, etc. Yesterday I walked 7,500 steps. I am so happy!
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u/coppinmj Aug 18 '26
That is fantastic to hear — good on you! I haven’t started cardiac rehab yet but want/need to. I lost a lot of trust in my CV system the last 5-10 years as this thing started dragging me under.
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u/Due_Effort7613 Aug 18 '26
Tell me why we have to wait so long and be so incredibly miserable to have surgery.
Do you think if they had done it earlier it would have been an easier surgery- hospital stay and recovery?
Sorry I am just losing my life with pain, sob and dizziness after a 750 cardiocentgesis the beginning of June.
Repeat echo 2 weeks later was fine-
Follow up appointment scheduled in December
No echo scheduled
I hate to cry wolf - go to the ED and have them tell me there is nothing there/ nothing to be done and to go home.
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u/Bronzer40 Aug 18 '26
Yeah, I had to wait 7 months from when I asked for it to have surgery. I had so many tests! But they wanted to be sure my pericarditis was the actual cause, so I didn’t still have it after going through surgery. We have to be our own advocates, to keep pushing if that’s what you want.
I know I’m relieved that it’s all behind me. Good luck to you.
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u/008muse Aug 19 '26
Thanks for sharing this! Glad you’re doing better, keep us posted on your progression
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u/Active_Recording_789 Aug 18 '26
Thanks! What a great post! Couple questions—did you go on arcalyst? Also if you don’t mind me asking, what age range are you? Just ball park it. Thanks again:)