Recurrent pleural/pericardial effusions— please help me figure out if I need to go back to the hospital or not.

38F. 5’4 180lbs. This is gonna be long, I’m so sorry, but I could really use some advice figuring out what to do.

I’ve been dealing with recurrent pleural and pericardial effusions for the last 12 months. My first one was a small LLL effusion in October 2024, diagnosed via CT. It was diagnosed in the ED— I had pleuritic chest pain, SOB, and was tachy to the 130s at rest, so they checked a dimer which came back positive, which led to the CT scan. Nbd, seemed likely related to a recent URI infection, so didn’t seem to need any follow up.

Then in early January I was diagnosed with bilateral pleural and pericardial effusions, also via CT scan. I’d been at the hospital for an endoscopic ultrasound to rule out a potential esophageal lesion that had been identified on that October scan. I’d been having pretty awful chest/back pain and feeling like I couldn’t breathe whenever I laid down for a few weeks before this, but my doctor at the time had written it off as just muscle pain, given me a script for a muscle relaxer, and told me to take ibuprofen. I hadn’t taken anything the day of the procedure though, since I’d obvs been fasting and those meds tend to be pretty rough on an empty stomach for me. I’d been taking the ibuprofen almost daily whenever I noticed it was starting to really hurt, so I’d been staying pretty well ahead of the pain. But that day with not taking anything, it was pretty horrible. Like, I would accidentally scream in pain if I moved the wrong way or breathed too deeply. Absolutely mortifying. So the GI doctor canceled the endoscopy and sent me down to the ED instead. The ED Dr ordered another CT scan, and that showed the effusions. Got scripts for Colchicine (stayed on for ~6 months) and Naproxen (stayed on for ~2 weeks), which seemed to really help. Echo a few days later confirmed the small pericardial effusion and showed “Grade I diastolic dysfunction.”

At the end of January I had a TIA, which bought me an admission and yet more tests, including another CT. I was started on a high intensity statin and daily aspirin (later switched to Plavix). In March, I had a follow up CT and a TEE (r/o PFO), both of which showed no effusions.

Was then admitted again this past July. Constant shortness of breath, pleuritic chest pain, worse lying down and better when sitting up/leaning forward, blue nails and lips, tachy to the 140s at rest, pulse ox 88-96%, BP normal/slightly low. D dimer was >2100. CXR in ED showed new LLL pleural effusion. Did a VQ scan (I’m allergic to CT contrast— normally fine with premedication, but on this occasion the doctor said he was worried I’d end up on a vent if they tried, so opted for VQ instead), which was normal. Non-con chest CT showed new small right and small-moderate left pleural effusions. 2D limited echo was normal, no pericardial effusion. Cardiologist said it was Pleurisy, gave me a script for Naproxen again and discharged me home. Of note, my symptoms had all improved in the hospital while on oxygen and Lovenox, but I pretty quickly deteriorated again over the two days between being discharged and when I followed up with my PCP. By that follow up visit, my lips and nails were blue again, oxygen 92-94%, HR in the 120s at rest. He debated sending me back to the ED, but ultimately felt there wasn’t much point since I’d just spent 3 days there. But given my symptoms, labs, improvement on oxygen and Lovenox and worsening upon discharge/discontinuation of those meds, he felt there could have been a small PE that was too small to be picked up on the VQ scan, so he started me on Lovenox 2x/day. That really, really helped, and all of my symptoms improved significantly within a few weeks. Follow up CXR two weeks later was normal.

In late September, started feeling the same symptoms again— pleuritic chest and back pain, worse with lying down, better with sitting up/leaning forward, shortness of breath, inability to take a deep breath, persistently tachy to the 140s and 150s even at rest almost all day, so finally went back to the ED again. They tried fluids and Tylenol first, but after 3 hours my HR was still in the 130s, so they said they had to recommend going forward with another scan. This time the scan showed small right and moderate left pleural effusions and a small pericardial effusion. Followed up with my pulmonologist who ordered an echo and thoracentesis. Also followed up with my cardiologist, who doubled my colchicine. The thoracentesis took almost 3 weeks to get scheduled, during which time my symptoms had again largely resolved. I told them when I arrived that I suspected the effusions had mostly resolved since my symptoms were mostly gone, and I was right— they did an ultrasound and there wasn’t enough fluid left, so they canceled the procedure. Echo was this past Monday, almost a month exactly after the original September diagnosis, and same thing— fluid was gone, echo was normal by then.

That brings me to today. I’ve got the same symptoms again— pleuritic chest/back pain, chest feels constricted/like I can’t take a deep breath, short of breath at rest and worse with any exertion, pulse ox mostly normal but has gone as low as 90%, feel like I can’t breathe if I lay down/on my side, but it’s much better if I sit up and lean forward. Very mildly tachy but nothing super worrying for me (100-110s, not that high for me, and def not nearly as high as other times described above), and normal BP. Been like this since yesterday AM. Based on the location and characteristics of the pain and my other symptoms, it really feels like this is an effusion again, this time on the right side.

I really, really do not want to go back to the hospital again if I don’t absolutely need to. I’ve followed up with pulm, rheum, and cardio to try to get to the bottom of this, but so far no one’s been able to figure it out. Whatever the cause may be, I’m cognizant of the fact that the ED isn’t the place for managing chronic conditions. It’s just really hard to judge as a layperson when it is/isn’t prudent to go get checked out for something like this that keeps on happening. I also really don’t want more radiation when I’ve already had so much just in this last year. And EDs are also just pretty gross (absolutely nothing but respect for the brave souls who work there!), and being in the hospital just sucks in general, so I’d really like to just avoid it entirely if I can.

On the flip side, I do recognize that there is some potential for concern with some of these symptoms. Also potentially relevant info is that my PCP stopped the Lovenox a couple weeks ago once we hit the 3 month mark from the July hospitalization. Follow up labs my pulmonologist ordered after the September effusions showed my d-dimer was down from its peak in July, but still a bit elevated (~1,300). So I mean… I guess in theory there could still be some clotting issues going on? But Idk how big of a risk that really is when considering the overall context. Lastly, according to pulm/cardio/rheum, the only test left to try is to try getting a sample of the effusion fluid itself, and see if that yields any further answers. Obvs that can’t happen if I don’t get scanned to get the effusions diagnosed in the first place.

So what do I do? If this was a weekday I’d just call the pulmonologist’s office and ask for advice, but of course it’s a weekend so that’s not an option. Is it dumb to try to watch and wait til Monday? Keep up with the colchicine, take the same naproxen dose they prescribed me the last few times, and see how things go? My dad (who I live with) keeps saying he doesn’t like the way my breathing sounds and that I should go back to get checked out just to be safe. But I feel like even though I feel short of breath, my oxygen is mostly ok, BP is normal, pulse is mostly ok/barely tachy, so I don’t think there’s a GLARING red flag saying I need to be seen today, other than maybe the pleuritic chest/back pain. Pls help! I just don’t want to be dumb about managing this one way or the other and don’t know what the smart move is here.