When first diagnosed with there was a lot of fluid in my pleural cavity, and a catheter was inserted. To start with I was producing about 200ml of fluid per day. In the last couple of months this has diminished to about 200ml per week. My GP is surprised at this as he would expect it to increase, but he has offered no explanation nor shown any interest in finding out why. My lungs still feel very congested, even after draining, and I get short of breath. Earlier they felt much freer. I find this a bit restricting as otherwise I don't feel too bad.
I don't think the catheter is blocked as fluid is still coming out.
Has anyone here had the same experience, and could offer advice or ideas on where to go next?
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pt45
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I have had a pleural catheter since March 2020 when stage 4 NSCLC was diagnosed. The volume I drain off has gradually decreased from 600ml every 4 days to about 50 ml every 2 days and my oncologist seems to expect this. (But I get the impression he thought it would decrease faster than it has.) My breathing feels fine.
I find that sometimes the fluid does not flow easily and I have to do deep breathing in and right out to get it to suddenly flow. The other day I was fed up with it being so slow so I decided to lie down flat on my back. The flow rapidly increased and I quickly got 190ml (3 days after the last time). I don't know if I have not been draining it properly for a couple of weeks or whether the fluid production has suddenly increased. I will find out maybe when I do the drain again today.
So my advice would be to try lots of different positions and breath as deeply as possible. Also ask you oncologist or nurse about it, and get them to put you in touch with the doctor who put the drain in as they will know more about it. If your lungs feel congested maybe you have not been draining all the fluid out.
I am surprised by how little guidance and support I have had, I could easily have concluded the fluid production had stopped as mine produces nothing without my various deep breathing antics!
Thanks Alldiffer. It's good to know that someone else has the same issue. But your oncologist (I don't have one, having opted not to have chemo) and my GP seem to differ in their expectations.
I don't do my own draining - the district nurse does that, and I'm usually sitting upright on a high chair. Not sure that I could try lying down. I've tried breathing differently and coughing, but it doesn't make much difference. I think you're right about not getting all the fluid out. It it's not any better at tomorrow's draining session I think I'll contact the respiratory clinic to see if they've any ideas.
[Later] Nothing at all came out at the draining session. My doctor has now organised a CT scan to see what's happening.
Does your drainage use the vacuum bottle or a bag? Mine uses a bag and works by gravity so lying down would probably not help. Standing up didn't.
Hi pt45, my pleural catheter connects to a 500 ml vacuum bottle. Since I have been lying down and doing deep breathing my drainage volumes have increased again. I hope you get some help soon to ease your breathing.
There seem to be two types of drain: bag and bottle. The bag relies on gravity so there's only about 1m of head. I don't know how much vacuum there is in the bottles but it could be as much as 10m if it's a full vacuum which sounds a bit scary. Using the bag I've not drained anything for 4 weeks now. I'm due a CT scan on Friday (took a month to arrange) after which we may know more of what's going on.
I expect the vacuum in the bottles is the right amount to be ok for the space around the lungs. My drainage volumes have gone on decreasing to about 30ml a day and I am actually going to the pleural clinic for an appointment tomorrow (first time!). Not sure why, my oncologist just suggested it would be a good idea. I hope I can have it taken out soon, it would be one less thing to deal with. My treatment is keeping the cancer stable, but I have quite a lot of side effects from the treatment, mainly to skin type tissues, eg sore toes, itchy scalp and gut effects, and fatigue. My lungs seem fine though!
Good to hear from you, I hope your CT scan explains things ok, and provides some reassurance.
A bit late I'm afraid. The CT scan showed that my pleural cavity was 'loculated' (not a word I'd ever heard of) which was explained to me that a sort of honeycomb structure was in there, and that the catheter was probably in a place that wasn't connected to any fluid. I suggested taking it out as it wasn't helping, but was told that with Covid around they didn't want to do that; apparently the day surgery space was being used as a Covid ward. Now things are easing up they're aiming to take it out. I've no idea if I'm still producing fluid and if so, where on earth it's going.
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