Respiratory Disorders Community
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Avatar universal

Any Ideas on Where to Next?

My husband has a mystery lung complaint that is slowly but surely going to kill him.

It has been going on for almost three years.

His left lung will fill with fluid (pneumonia), there are issues of pleurisy, reduced oxygen levels, high white blood cell counts. The doctors seem to think his body is reacting to inflammation as if it is an infection. They did an exploratory thoranectomy in Oct 2011 and found nothing. They did some sort of antibacterial spray in the lung to try to flush the gunk that had collected at the bottom and couldn't drain. He ALWAYS has at least 70mls of gunk in the CTs and xrays - they can't seem to get rid of it.

Complications from the surgery (his lung simply never returned to the right size) mean his lung is now about 2/3 the size it should be.

Every 2-3 months he is readmitted to hospital for lung drains and investigations. Immunology are also now investigating him. He has now been on 25mg of pregnisone (steroids) for 15 months, immunosuppressants (what they give organ transplant patients to accept the new organ) for 4 months, many types of pain killers, and various antibiotics when necessary.

They have tested for almost everything under the sun - legionaires disease, lung cancer, fibrosis, tuberculosis, everything common and obscure... and ruled them all out.

They are now at the point of considering removing the left lung in order to preserve his heart (steroids seriously muck with your body!).

Oh, and at no stage has he had a cough. Many many private and public (NZ has free healthcare in hospitals but you pay big for private care) specialists have looked at him and his case. NO ONE HAS EVER BEEN ABLE TO GIVE US A DIAGNOSIS OR PROGNOSIS FOR HIS LUNG PROBLEMS.

He is often in hospital, often with a drain in his back, his scans often show emypemas (from what I can gather, sacks of fluid in his lungs that then pop and fill the lung with the puss and fluid in them), often in excruciating pleurisy pain and has not been able to work since this all started. Often with a oxygen level of only 86, yet very rarely needing oxygen.

It would be easier for us all if they just said it is cancer (it has a name, and a treatment, you can have a prognosis of a year or 'say your goodbyes'). If only we could have a name for this illness that is destroying all of our lives.

Anyone in a similar boat? Anyone has any idea of where to go from here?
1 Responses
Avatar universal
Hello and hope you are doing well.

Understand your predicament and sympathize with you. Occupational lung diseases are sometimes difficult to detect, until they have caused significant lung damage. A suggestion, there is the option of pleurodesis, where the pleural space is obliterated, this prevents further loculated fluid collection.

Hope this helped and do keep us posted.
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