How long was the delay in getting your diagnosis?

Once again, thank you Somya for including me in another interesting discussion. Having several chronic conditions, I recently started gaining abnormal fluid in the lower legs. I have been using the compression stockings on and off for about 10 years for much more minor lower leg edemas. I also had tried Lymphatic Therapy a year or so ago with some relief. However, the fluid retention in the lower legs started increasing severely nearly 2 years ago. I have been given different diuretics with varying dosages. Last year, in late 2024, I developed severe shortness of breath (SOB) with any minor exertion. My Pulmonologist ordered an ultrasound of the lungs which found Pleural Effusions on the lungs and a small Pericardial Effusion (Heart). While waiting on an appointment with a specialist to drain the Pleural Effusions, the situation became severe and I was admitted to the hospital in November. 1.1 liters of fluid was drained from the right lung. Just last week (02/20) I was again admitted to the hospital and they drained another 1.1 liters from the right lung. The Effusion on the left lung was minimal as is the Pericardial Effusion so they took no action there.

After the latest hospitalization they increased the diuretics, again. Each time in the hospital and with the follow up appointments with several of my doctors, none can state definitively why the fluid continues to accumulate in the lungs and increases in the lower legs. All of the normal causes of the Effusions have been ruled out. So now I continue to wait for definitive diagnoses and proper treatment to find answers to this issue. (Speaking of "Diagnosis Wandering".) This as I monitor my oxygen saturation closely and remain cautious of my normal and limited minor exertion.

So now I have a standing order for Radiology, approved by my insurance, to have another ultrasound on my lungs if/when needed. If the SOB becomes severe again I will have the ultrasound and go back to the have the fluid drained again. This barring diagnostic delays, scheduling delays, etc. for the testing and ultimately for the procedure. Preferably in an out-patient setting and not back to the E.R. and then a few days in hospital. All of this as treating symptoms and not treating the causes of the underlying issue(s), speaking of "diagnostic wandering".

One side note with the Pleural Effusions. The testing and imaging will show differing levels of the Effusions in the lungs. The X-Ray in the E.R. was defined as a "tiny" Effusion last November, followed by the ultrasound which diagnosed it as a "small" Effusion. When the CT Scan was done, the full extent of the fluid was found to be Moderate to Severe. When the fluid has filled the Pleura space behind the lung and partially collapses the lung, the 3D image of the CT Scan illustrates it where the X-Ray does not. Normal fluid in the Pleura is constantly about a tablespoon in comparison to the liters removed.

Gordon

It took 12 years before I had the correct diagnosis. I don't understand why it took so long. I had two hospitalizations and each time they diagnosed me incorrectly! It's amazing to me looking back on it now. They misdiagnosed me twice - once in 1981 and once in 1988. Wouldn't you think they would have noticed something? When I was finally diagnosed everything made sense. But you can never get those years back. They are gone forever.

The two weeks like in the 90s and just one medical opinion

Since my comment in February, I have been back in the hospital 6 more times for a total of 8 times to drain / treat these Pleural Effusions. Currently, the total delay in diagnosing why the fluid continues to accumulate has been 10 months...Typically this fluid build up signals diastolic or congestive heart failure, or some malignant form of cancer. Neither of which has been diagnosed.

During my stay in June, they performed the talc Pleurodesis in the attempt to "glue" the lung right to the pleural space, to remove the area for the fluid to collect. This apparently only worked partially since on the second day the chest tube got inadvertently yanked out and they decided not to reinstall it. That left an area of the pleural space that continues to accumulate nearly a liter of fluid. In July, I was back in for a week and the drained 750 ml from each lung.

So I will be having a second follow up with the surgeon who did the Pleurodesis in a week or so. Hopefully they will have some results back from the biopsy taken over 6 weeks ago.