Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Relief is just a suction tube away! That little rattle in my chest that once heralded the onset of an exhausting and frightening hour of trying to cough out congestion is now just a signal that I need suctioning. Suctioning seemed like a big deal at first but quickly became fast and easy for my caregivers - a mere annoyance, not a medical event! Suctioning makes me cough and produce some weird facial expressions so it probably looks like a miserable experience, but it isn't at all. It's no more uncomfortable than any ordinary coughing spell and it leaves me rattle free.

My wife changes my Trache tube about every 5 to 6 weeks. When I have more secretions than normal, and we are having trouble suctioning them up, we use different techniques. When they hide - what we do is loosen the collar, which holds the tube in place, then tip the tube out so it is just barely in and suction, this way the catheter is starting to suction higher than usual. That usually does it. If not we have taken the tube totally out and then suctioned. Before putting the tube back in it is cleaned to make sure there are no secretions on the outside of it as they are uncomfortable. Most people I know are too afraid to do something like this and I don't think your doctor would approve. LoL.

I don't feel a thing so don't be concerned that it is uncomfortable.

Life-threatening congestion is a thing of the past.

Here is a video of my wife suctioning me - it was done in Dec 2008. It has taken this long to find free software to edit it.

The video blanks out for short periods of time so don’t be alarmed, the audio keeps going.