@curlz I went through something similar last year. They decided mine was related to heart failure. Do see a cardiologist. Please know that all forms of treatment may cause issues with the heart.

@curlz
Hi, hello. I’m really sorry you’re going through this. I know how you’re feeling the frustration, the fear, and especially the uncertainty of not knowing what’s causing it.
But I also want to reassure you that if they haven’t found anything and it’s still a mystery, try to take some comfort in that. I never found out exactly why I was having the fluid either, but knowing that it wasn’t cancerous or anything like that helped me move forward.

In my case, I saw so many different specialists trying to figure out what was causing it. I saw cardiologists, rheumatologists, an OB-GYN, pulmonologists, thoracic surgeons, and even an infectious disease specialist. I had so many tests done, including a PET scan, and they ruled out TB, cancer, autoimmune diseases, heart issues, and so many other things.

I was also getting thoracentesis about once a month, and they would drain around two liters of fluid each time. What was crazy was that I really didn’t have many symptoms. The only thing I noticed was some shortness of breath with heavy strenuous activity. The very first time they discovered the fluid, I had more than three liters and had absolutely no symptoms.

I had multiple opinions and spent about nine months trying to figure everything out. Because I was scared, I ultimately opted the less invasive procedure with a interventional pulmonologist. I had a pleurodesis/pleuroscopy with a pleur x catheter and was sent home with drains. A nurse would come to my house every other day, and sometimes every three days, to drain them.

Looking back, I really wish I would have opted for VATS instead with a thoracic surgeon at the Mayo Clinic. With VATS, you’re admitted to the hospital and typically stay for several days with the drains continuously draining while you’re being monitored. I feel like that would have been a better approach for me.

My procedure ended up being about 70% successful, and I was left with two small pockets of fluid. I’m fine now and can live a normal life, but if I could go back and make the decision again, I would have chosen VATS.

I would also ask your doctors if a PET scan would be appropriate for you, especially if you haven’t had one yet. I had one, along with what felt like every test in the world, and nothing was found.

I honestly have my own theory that mine may have been COVID-related because I’m finding more and more people who have dealt with unexplained fluid issues after COVID. I obviously can’t say for sure that’s what caused mine, because I never got an answer, but it’s something I’ve wondered about.

Of course, I’m not a doctor, and I can only speak from my own experience. Your situation may be completely different from mine. But with how quickly your fluid seems to be coming back, I would definitely have a serious conversation with a thoracic surgeon about your options.

I never found out exactly why I had the fluid, but at least I know it wasn’t cancerous or anything like that. And I’m okay with not knowing the “why” as long as I know I’m okay.

If you have any questions about what I went through, please reach out. I’d be more than happy to share my experience with you. ❤️