Hello, I know this thread is rather old but it looks like people have commented on it within the last 8 months. I'm not one to post on stuff like this but if my story helps just one person, it will be worth it.
So for starters in 2011 at 21 years old I was diagnosed with a small trivial pericardial effusion. I was sent to a cardiologist who told me it wasn't anything to be alarmed about
, he told me I needed to go on and live my life. Fast forward to 2013, I had a scan done for something digestive related & the scan picked up a mild pericardial effusion. A cardiologist ran another echo & said that the fluid was still of no concern to my health and wellbeing. I had bloodwork done for rheumatoid arthritis and lupus, all of which came back negative. Fast forward again to 2016 at 26 years old on my birthday of all days. I went to a clinic due to a sore throat. The on call doctor listened to my heart & heard a very strong murmur. It concerned him & he asked me about
my heart history. I told him I had been told I had a pericardial effusion and his eyes bugged out of his head. He wanted to know why a young, otherwise very healthy female would have a pericardial effusion. (Note that I was living in a different city at this time). So, thank God for this on call doctor who sent me to a cardiologists. I had an echo done & aftwrwards, the nurses were drilling me on my family history, etc. I could tell that something serious must have been spotted on my echo. They were just acting kinda odd. They told me the cardiologist would be right in. When the cardio doctor came in, he told me that I had a very large pericardial effusion but it wasn't too the point of tamponade. He asked me if I had been having any symptoms...I told him other than shortness of breath when walking I was usually ok. I thought my shortness of breath was due to a mild mitral valve regurgitation. He told me it was apparent that the effusion had developed over several years because if the amount of fluid I had at the time would've come on suddenly, it would have killed me. This was a scary time for me and he put me on colchicine and naproxen to treat my effusion. I came back to him 2 weeks later with zero improvement. He sent me onto a cardiovascular surgeon who did a PERICARDIAL WINDOW SURGERY. This was in May, 2016.
For that surgery, I was in the hospital 10 days draining a little over 2 liters of fluid through my chest tube. I have never felt so terrible in my entire life and I honestly didn't know pain could be so severe. The nurses face me dilaudid through my IV and alternated it with Percocet every several hours to control the pain of the tube which felt like a sword in my left side.
Anyway, my biopsies came back negative for cancer and any of the other nasty stuff. Praise God! My surgeon told me that I had a 2% chance of the fluid ever coming back. (Ha!...just read on)
2 months (July 2016) later I was having SEVERE shortness of breath. I honestly felt like I was carrying weights around in the left side of my chest. My mom took me to the ER & I had developed large pleural effusions now. Needless to say, I was admitted to the hospital. The doctor performed a thoracentesis which actually wasn't as bad as I had worked it up to be. I was so relieved to have the fluid removed from around my lungs. The doc pulled off 1.2 liters of bloody fluid. I was shocked and terrified when I saw it. They did x-rays after that were still showing large pleural effusions. So, after that I was still not much better. I then had surgery on my left lung called video assisted thorascopy (VATS). I had yet another CHEST TUBE. . Oh my oh my I never dreamed I would deal with one of those again, especially so soon. I also had 2 lung biopsies during this surgery due to some nodules on my lungs (NOTE: I have never smoked a day in my life and I do not drink alcohol). . I spent 15 days in the hospital and 5 of those days were in the cardiac ICU. I ended up having another surgery where they inserted a pleurx catheter in my left chest cavity so I could go home from the hospital. I was also sent home on 60mg of Predisone (hello moon face and weight gain).
THE DIAGNOSIS: After discharge from the hospital I was sent to a rheumatologist. I had blood work with a +ANA for lupus while I was in the hospital during July, but also had some tests that came back -ANA for lupus. I had blood work that showed a lot of inflammation in my body and also had protein spotted in my urine. My rheumatologist warmed me that lupus or any of the autoimmune diseases that can cause such things as pericardial/pleural effusions are incredibly tricky to diagnose. My rheumatologist put me on Cellcept and started a slow taper of my prednisone. I am now 27 years old and it's a solid year since all of the crazy surgeries and chest tubes. I am truly a true testament of answered prayer and God's healing power. I still have many difficulties with fatigue, muscle aches, hair loss & some occasional shortness of breath..but I see a wonderful rheumatologist who is so kind & incredible attentive to running regular tests, monitoring my medication, etc.
MY POINT IN THIS WHOLE STORY:
If you have any type of pericardial or plural effusion. Don't let a doctor try to tell you it's no big deal. You know your body best & let me tell you, its not normal to have fluid like I did around the heart or lungs (although we all have a little bit of fluid naturally, which you can read about
on Google). Anyway, if you are diagnose with effusions GO TO A RHEUMATOLGIST. They can run a great series of bloodwork & other lab work to diagnose your problem. Don't give up until you have a diagnosis. God bless you!
Post Edited (Olemissgirl) : 5/5/2017 12:28:36 AM (GMT-6)