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cindyconstien (@cindyconstien)

No cause found for persistent pleural effusions

Lung Health | Last Active: Mar 8, 2021 | Replies (25)

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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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Replies to "Good morning. Since I last posted I had a pleurodeses with talc on the right lung..."

@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?

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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