Sorry to learn of your condition. I, too, have been treated for pneumonia 4 times already this year alone!

I am in my 7th year of 100% tube feeding, and realized long ago that I wouldn't be able to swallow ever again, so I resigned myself to making the adjustment. Not my first choice, and damned difficult to do, but a whole lot better than the alternative.

Almost three years ago I learned that I had pneumonia for the first time, and it was successfully treated. But it kept on recurring and my doctors could not figure out why this was happening all of a sudden. The Christmas before last I lost 3 weeks of time and over 25 pounds of body weight that I couldn't afford to lose and that I haven't been able to gain back.

In an effort to find out why the frequent pneumonia, one of the many tests I took was the flouroscopy x-ray conducted by my speech therapist last November. The test confirmed that my epiglotis was no longer inverting to properly close off my windpipe, and whatever I tried to swallow, including fluids, went straight into my lungs.

We had known for years that the epiglotis was not fully functioning just by listening to the extreme nasal sound of my voice, but apparently the side effects of chemoradiation and surgery just continue to damage tissue forever.

I find it impossible not to sip fluids throughout the day even though I have been advised not to in view of the risks of aspiration. I no longer have any cough reflex when fluids do enter my lungs, a condition called silent aspiration, and so if I don't force myself to cough up whatever amount of this phlegm-like discharge that I possibly can before retiring at night, I end up laying there listening to these horrible percolating and gurgling sounds until I do. Scary stuff!

My saliva glands were wiped out during early treatment and thereafter I lost the first line of oral hygiene defense. Anything I drink washes whatever bacteria or (?) that is present in my mouth directly into my lungs and ultimately absorbed by my bloodstream.

So I have become extra diligent about clearing my lungs of any fluids whenever I can. But I am aware of the risks I am taking when I have a drink to help re-hydrate my dry mouth.

In any case, I thought I would share this nightmare with you just in case you weren't aware of this silent aspiration business and wanted to check it out. Hopefully you will be able to rule it out as the reason for the recurring pneumonia.

Good luck with your swallowing efforts, and I wish you every success with your health in the future!

JT2