No cause found for persistent pleural effusions

Posted by cindyconstien @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.

@@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?

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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.

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@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?

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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?

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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.

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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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@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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I had open heart surgery in November and seemed to be doing ok after until the end of January when I got pneumonia and things just went downhill from there….the beginning of April I was having chest pains but the doctors could not find anything wrong, then the beginning of May the chest pains came back, but this time much worse, shortness of breath and running low grade temperatures, and echo showed fluid around my heart, the doctor had started me on steroids before they found this and when they went to drain the fluid was very minimal. The pressure on my chest continued and they found fluid around my lung – they drained the fluid 550 cc and by the following week the fluid built up again and they drained another 330 cc. the doctors have run countless blood test with the inflamation markers high along with the white blood count high, they started me on three month dosage of steroids, however I have been on them for a week now and believe the fluid is back again and no relief from the pressure and palpatations I am having with my heart. They have run CT scans on my head, chest abdomin, had upper GI showing inflamation in my stomach, but they can't find out the root cause…I am desperately seeking answers since I can't work and have been in the hospital 13 days in May alone….anyone help???

Liked by lucky1038

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Hi @bethkemper, you may have noticed I moved your post to this existing discussion on pleural effusions so that you can read what was said by others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so scary to have this continue to happen.

I wanted to tag fellow Connect user @cindyconstien in hopes she will come back to join in the conversation again.

Back to you @bethkemper how long did the doctor's tell you it would take for the steroids to start working?

Liked by lucky1038

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they said they should start working in no more then a week

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Good luck Beth. I had another pleurodesis in January on the right side. Last xray says it held but I still can't breath well. Can't carry anything or go up stairs without having to sit and rest. I've put on 30 pounds since January. My feet legs and abdomen have swollen and the feet hurt to even walk on. I can't get insurance to approve a PET scan or cardiac MRI, though I'm told those are about the only 2 tests they haven't run on me. Early May I went to the "Functional Medicine" unit at the Cleveland Clinic. A new Dr for fresh eyes. They drew 18 vials of blood and tested all kinds of new stuff, all inconclusive. A Dr friend looked at the results and suggested I get a referral to a pulmonary lymphoma specialist, but Cleve clinic Dr. says not enough variance in results to justify the referral. Very depressed. If Mayo Clinic had a Dr. that would like to take me on as a guinea pig I'd travel to see them, need someone that is willing to experiment on me. Rob C

MAYO – HELP!!

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@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/

Jump to this post

Hi, your Dr can put a pleurex which can be drain daily depending on how much fluid is there. Home health can assist with this.

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Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

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@cindyconstien

Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

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@cindyconstien Rob, good to hear from you with the update. Congrats on getting back to 70% That’s a big improvement. But I can understand your desire for further improvement. This pandemic restrictions do put a limit to exercise opportunities. Did you see the Virtual Walking Support Group here on Connect? https://connect.mayoclinic.org/discussion/lets-go-walking-join-me-for-a-virtual-walking-support-group/

Members report their walking accomplishments and exercise alternatives. Many people have posted good YouTube videos of exercise alternatives when confined to home. It also helps to motivate when talking with others.

With the stay home rules have you been able to continue with the lymphedema massage appointments?

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@cindyconstien

Good morning. Since I last posted I had a pleurodeses with talc on the right lung May 2019. Initially it really helped, I was exercising and walking. But then I started to develop lymphedema, focused from abdomen to feet. Always wondered where the fluid in my lungs came from and had asked if you block off the reservoir where will it go. I saw 2 more cardiologists, one a pericarditis specialist, cardiac MRI and lots of other tests. I have small pericardium issues not enough to pursue. Saw a hematologist/oncologist, full PET, nothing. ENT has scoped me twice. Many CAT and X-Rays. Started seeing a Rheumatologist in June, had seen one in 2017 but he didn't think enough issues to pursue. New one in July felt I had some auto immune issues. Lots of tests and follow-ups' she started me on hydroxychloroquine and azathioprine and I started to breath better. She is treating me as though I have Lupus. Pulmonologist has said there is nothing else she can do. My breathing function tests and O2 is good. Several small localized effusions are not worth attempting to drain. Also saw Vascular med in October. He did ultrasounds on abdomen, legs and feet – I baffled him. His suggestions were manual lymph massage, lasics and support hose – keep legs up and walk a little every day. I started seeing a massage therapist who is trained in lymphatic drainage – she worked miracles. Exercising better walking further. Have had trouble recently getting refills for hydroxy. I started prednisone after surgery but went off it, that's when I felt I was backsliding. Went back on in the summer but dropped down to 5mg. Have tried twice to go off and every time I deteriorate and have to go back on. I'm operating at about 70% which is a great improvement. Difficult to breath in cold, hot or humid weather. Low energy. Staying inside all the time diminishes exercise opportunities. Feet especially swell and are uncomfortable to walk on but can be done.

Rob Constien

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Hi Rob,
You’ve had quite the ordeal. Until I read your posts tonight I thought my situation was unique. Now I think I may just be at the start of a long race that you’re very familiar with: how to end chronic pleural effusions.

My experience with this began after open heart surgery at Mayo in May where I had my aortic and mitral valves replaced and my tricuspid repaired. It was a rough surgery. I had my first thoracentesis a few days after the surgery. At that point I was so generally miserable that I was unaware of any particular difficulty breathing — I was having difficulty just living. After discharge from Mayo (13 days later), I went home where my condition continued to deteriorate. Four days of freedom, and then a rush to the local emergency room where I was admitted for 9 days while they worked on dealing with my fluid overload – including a second thoracentesis that removed 1.6 liters.

Once discharged I went about the business of ever-so-slowly regaining the ability to care for myself. As I advanced from using a walker to being able to drive, I began cardiac rehab. I wasn’t getting stronger and, while breathing was easier, it still wasn’t good. Long story short, I had a third thoracentesis in early August. I was briefly better; for example I was able to climb the stairs from lower to upper level while stopping only once to catch my breath. I had high hopes that today’s chest xray would reveal the absence of pleural effusion. I had hope even though the last two days had found me struggling with breathing. Well, my hope was in vain. Yet again there’s fluid. Right lung. Just like before. No clear cause. My pulmonologist is tentatively recommending colchicine to treat the inflammation and no thoracentesis. She wants to consult with my Mayo and local cardiologists before finalizing this as a treatment plan.

After reading about your experience, I’m feeling pretty hopeless that this fluid war will be over anytime soon. At this point, I’m worse off than before the surgery. I hate to think that the misery I’ve endured for almost 4 months is simply the beginning of the downhill slide of the rest of my life.

I sincerely hope things improve for you soon.

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