Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Pneumonia is one of the leading causes of death for people affected by ALS. It is a very serious medical problem.

What I am going to say here stems from my personal experience and is only my opinion from that experience. I have been fortunate that I have never had pneumonia since getting my tracheostomy over 2 years ago. There are several reason why that are listed below.

• Proper suctioning. I strongly feel this is a key element in preventing pneumonia. Making sure all secretions are completely eliminated.
• This is likely the biggest contributing factor. When I suspect there is fluid in my lungs, that is just sitting there, we increase the volume of my vent. This expands my lungs and that brings up the secretions that were deep in my lungs. If left there it would certainly have resulted in pneumonia.
• I also have a one-way valve that we put on my circuit (air hose), this way I can stack breathes and really expand my lungs. This is almost like a cough assist machine, I have never used one but from what I understand they work similar to this. The only difference is the cough assist will suck the air back out, what I am doing requires an exhale so if you have a cuffed trache tube this would not work. I have a cuffless so can exhale through my mouth and nose.
• One other useful activity to prevent a buildup of fluid is to go for a trip in your vehicle. Being bounced around really loosens the secretions in your lungs and makes it possible to easily suction them out.

When I discuss making adjustments to my vent with fellow PALS in the US they are horrified that I would increase the volume. They are not allowed to touch the controls and I believe this practice is why so many end up with pneumonia.

We are taught to make adjustments and this way we can make it comfortable without having to call someone to come and make adjustments for us. There are times we make minor adjustments to make it more comfortable then set it back. When I was still able to talk we would increase the volume so I would not get short of breath, then turn it back down when I stopped talking. Now that I can no longer talk this practice is no longer done.

We still increase the volume occasionally to make sure there is no fluid sitting in my lungs. Sometimes this brings up a lot of secretions and there is a lot of suctioning that has to happen. Other times there is nothing. I am convinced this practice has kept me from getting pneumonia.

When you have a trache and vent for awhile you get to know when something is not quite right and can make adjustments that prevent problems.  

Added: Oct 23, 2010

Updated: Oct 26, 2010