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cindyconstien
@cindyconstien

Posts: 5
Joined: Jan 20, 2016

No cause found for persistent pleural effusions

Posted by @cindyconstien, Dec 24, 2018

I have been treated for 2 years for pleural effusions. All fluid and blood work comes back clean – no cancer, infection, virus – nothing. They had been tapping both lungs and getting 1.5 to 2 liters from each side. The heart has been checked out (EKGs, Echos, stress tests) and there are no issues.
In April I had a bi lateral pleurodesis performed with biopsies from my left lung (no issues). They used talc and 7 months later I just had 1.8 liters drawn from the right lung. They believe the left side was moderately successful but the right side failed. I'm about to schedule a redo on the right, perhaps using the chemical option. I am also looking at possible "constrictive pericarditis" and will get another echo today, possibly leading to a heart cath to look closer.
I am a non smoker, relatively fit. I ran marathons and triathlons, ate appropriately, non diabetic. Only medication is for cholesterol management and inhalers to try to relieve my breathing discomfort.
I'd like to treat the cause – not the symptoms.

Any ideas?
Rob C.

REPLY

@@cindyconstien and Rob C. It's beyond frustrating when we have symptoms that make us ill and no known cause has yet to raise its head.
I found this: https://www.webmd.com/lung/pleural-effusion-symptoms-causes-treatments#1
What do your doctors say about a cause for you?

Been through all the "normal" causes. Heart, cancer, thyroid, auto immune/Lupus, etc. Lungs are healthy – no damage at all. They are now saying that we may never know the cause – – beyond frustrating.

@cindyconstien – I imagine that you were tested for all sorts of infections too. It's tough to have to deal with this sort of thing but there are treatments and the talc sounds promising. When will you have it done?

X-ray this morning shows re accumulation of fluid. Have asked for a thoracentesis ASAP. See surgeon 1-3. But what if the pleural cavity provides a reservoir for fluid that is then dammed off. Where does the fluid go next? Still no cause or identification where the fluid comes from. If the pleurodesis works, what is life like afterwards?

Cindy. I'm afraid that this over my head. I need to recruit others to help and try to answer your questions. I am guessing that your pleural cavity will continue to fill as long as this persists.
The fluid has to be drained if it's dammed off. Some of it will be reabsorbed by the body, but not enough to solve the distress it will cause.
I hope that you continue to ask your doctor these questions and also research them.
I am also hoping that others with pleural infusion chime in.
Please keep me posted.

Hello @cindyconstien,

In a pleural fluid analysis or thoracentesis, your doctor will remove fluid from the pleural membrane area by inserting a needle into the chest cavity and suctioning the fluid into a syringe. The fluid will then be tested to determine the cause.
Pleurodesis, is a treatment that creates mild inflammation between the lung and chest cavity pleura. After drawing the excess fluid out of the chest cavity, a a talc mixture is injected into the area which causes the two layers of the pleura to stick together, which prevents the future buildup of fluid between them. https://www.mayoclinic.org/diseases-conditions/pleurisy/diagnosis-treatment/drc-20351866

You might also be interested in this conversation where @blueot and @lisakuehl have written about pleural effusion: https://connect.mayoclinic.org/discussion/pleurisy/

@kanaazpereira

Hello @cindyconstien,

In a pleural fluid analysis or thoracentesis, your doctor will remove fluid from the pleural membrane area by inserting a needle into the chest cavity and suctioning the fluid into a syringe. The fluid will then be tested to determine the cause.
Pleurodesis, is a treatment that creates mild inflammation between the lung and chest cavity pleura. After drawing the excess fluid out of the chest cavity, a a talc mixture is injected into the area which causes the two layers of the pleura to stick together, which prevents the future buildup of fluid between them. https://www.mayoclinic.org/diseases-conditions/pleurisy/diagnosis-treatment/drc-20351866

You might also be interested in this conversation where @blueot and @lisakuehl have written about pleural effusion: https://connect.mayoclinic.org/discussion/pleurisy/

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Am coordinating my 8th thoracentesis now. Had bi lateral pleurodesis in April. No cause found, no relief on right side from pleurodesis. Has anyone heard of a C PAP connection? I was diagnosed with sleep apnea in 2013, in fall of 2014 a chest x-ray showed a pleural effusion for the first time and has steadily worsened. I recall no other change in life style.

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