Pleural Effusion

[down_under_girl]

HI

I'm 29 and 3 months ago i was diagnosed with Pleural Effusion ... my drs cant find a cause they have done all the tests they can think of they have ruled out cancer, lupus & TB ... but they are no closer to finding out what actually caused this .. their latest theroy is that its an autoimmune disease which kinda scares me cause from what I have read about them they are basically the body attacking itself .. i'm not on any medication for it ... i just get to keep going back to my dr every 4 or so weeks and he gets to tell me come back again i am no closer to an answer ...

Is it wrong to want to know answers because every Dr I have seen so far cannot tell me WHY ... thats all i want to know ...

i hate being sick and not knowing why or if i did something to cause this ... i can no longer walk to work like i used to (its a 25 mins walk) so i get a taxi everyday to work and then i get someone to drive me home or i get another cab home ... which is frustrating because i should be able to walk to work ..... i also feel sick every morning (no i'm not pregnant - the hospital ruled that out 3 times) kinda like morning sickness which i hate too ....

has anyone else got this disease that can tell me how to cope with this ? coz right now i'm not and for people who dont have this disease or dont know anyone who does its hard to explain so that they can understand how bad/serious this is...

Any replies would be most welcome & appriecated.

thanks

[Davy9]

Have they tapped the effusion? If they have drained (tapped) the effusion they can determine if it is transudative (non infectious) or exudative (infectious). They can also look at lab work to search for an active infection in the body. You need to share more information about your situation. Tell us what has been done about the effusion. Is it stable, chronic, recurrent, encapsulated (AKA loculated) or resolving????? An effusion is more indirect than direct. They are caused by a number of things so it is difficult to look for a direction without more clarification.

[down_under_girl]

HI Davy9
thanks for replying to answer you question. Yes i have been drained/tapped twice 1st time (which hurt like hell coz they didnt use enough ansthestic so i felt the entire procedure) 1.5 ltrs was drained (sorry dont know how many OZ that is) the second time 750 mls was drained ... they have run every test they can think of and are no closer to finding a cause ... they have ruled out the usual suspects cancer, TB, Lupus ... my dr's latest "theroy" is an autoimmunue disease ... which is not very helpful and only leeds me to be me to be more frustrated

I dont have the paperwork for the blood tests (dr kept that) I have the xrays and the last one i had 3 weeks ago showed a slight improvement ... basically my dr is playing the waiting/monitoring game .... he keeps saying come back in 4 weeks and we will see what is going on...

As far as i know they have done every test they know ... the next option is surgery so they can put a camera in and to quote my dr "have a look around" ...

I'm sorry i'm not the best with information but what i have said above is all i know ... i am no closer to finding answers and its starting to take its toll on me ... i hate being sick and the restrictions it is causing me in my everyday life ...

[Davy9]

d-u-g I am sorry to hear how much you're going through. The effusion is most likely transudative. That means it has no infectious properties such as pus or microorganisms. It is just a large fluid accumulation inside the body located in the pleural space. Normally the pleural space has a thin layer of lubricating fluid that allows the lungs to move within the chest. By definition your effusion is considered recurrent/chronic because it did not resolve.

I cannot tell you what you want to know, which is the cause. They have done a number of studies on the fluid they removed to try and learn more about why it is happening. Apparently they have not been definitive leaving the underlying cause unknown and untreatable. Having them inspect the area using a fiber-optic scope is another option. It won't be fun but it is only marginally invasive. Given that there is no overt disease process evident a "look see" will help understand what's happening.

Try and keep a calm and positive perspective. Eat well and take normal doses of supplemental vitamins. Get as much information as you can from the Docs. No news is no news. Yes, it is a trial to have to go through but we each face trials at times. Be strong and think healthy.

[down_under_girl]

Hi thanks for your reply again ... basically i am sick of being sick ... this is taking a toll on me mentally & physically .... i want answers i mean i deserve them dont i ? its been 4 months today since i found out i have this and i am no closer to finding answers than i was 4 months ago .. surely there must be answers somewhere ...

i want to give up i really do ... i hate this feeling of not being able to do what i want to do ...

[Davy9]

d.u.g.. For what its worth it does sound as though the proper steps are being taken. Medicine is not always cut and dried. From your prior post, it does sound as though the pace of the effusion fluid accumulations has slowed. I do appreciate that you're not feeling well and are anxious to understand the problem as well as getting it resolved. If you genuinely think that the doctors taking care of you are not being proactive enough then do seek out alternate medical advice. You can transfer all of the test results, etc... to a new clinician and obtain their perspective on your condition. These situations are frustrating for the patients and their physicians.

[down_under_girl]

I've given up on the medical profession altogether ... i've had enough of them telling me NOTHING that i dont know already ... so i've decided that my next dr's visit is going to be my last - i dont give a damm what he says i'm talking my records with me and never going back again ...

thanks for your reply but i'm not planning on returning to this site ... there are no answers anywhere ....

[Davy9]

d.u.g. A pleural effusion is not something that should be ignored. I am sorry that I've been unable to answer your questions more specifically. There are not just a few reasons why they happen and I know nothing about any test results, etc.... Giving up on getting this figured out will likely not make things better and it could make them worse. At least try getting another medical opinion before you give up.

[VivCraske]

Hi there

I wonder if I can help. I am an alternative therapist, practising Meta-Medicine. A Meta-Medicine diagnosis shows that every illness is preceded by a specific emotional shock, which starts an emergency program.

Imagine you're an animal and abandoned in the desert, say. What your kidneys would do would be to change their function to hold onto as much water as possible in order to help you survive. This boilogical thinking happens in humans too. A pleural effusion is your body reacting to a shock where you felt abandonned or isolated or not adaquately supported or felt that life was a threat.

In order to move back to wellness, I give my clients a holistic therapy plan that looks at the mental, physical, spiritual, social and environmental issues around their specific shock.

I hope you're intruiged by this. To find out more, visit, [moderator note: website address has been removed]

All the best

Viv

[barbie0307]

You're going through the same thing as my son is. They have no answers as to the cause of the effusion. Have they tried treating you with just antibiotics after the tapping? This latest bout my son is having, I insited they put him on antibiotics because his symptons had been coming back and he got a sinus infection which the doctor treated w/antibiotics. The next week he went to see if they could drain fluid and the doctor said there wasn't enough to drain. It leds me to believe that possibly antibiotics are helping. I know how my son feels, and how angry he is that they can't find out what is causing the problem. He is young and wants to get on with living, not with this hanging over his head. My son's doctor also had to do exploritory surgery to find the cause, which of course he didn't. But they had to do a pleural peel b/c his lung was enveloped in an infection. When I asked the doctor what caused it, he replied "I don't know, what causes the common cold". The man has terrible bedside manners and I was in no mood for it. We have since changed doctors, but it hasn't done much good. My son also doesn't have the luxery of medical insurance so that's another huge problem for us. Please hang in there although there isn't a guarantee they will find the cause, you have to because it's all you have........ hope. Try to be thankful that the causes are the big ones, keep happy thoughts please!