Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

Getting a Feeding tube on low FVC

 

I had a PEG installed Jul 17, 2007.

 

Several months before my FVC was 30% and I was having extreme trouble swallowing and was getting nervous about my condition. Since I was not getting any support locally we went to a major centre and talked to a respiratory surgeon, he tested me and found my FVC had improved and was 40% (according to his test), he pushed for a PEG ASAP before breathing got worse. I agreed to have it done.

 

It took 2 months to get the appointment, by this time my swallowing was much better, breathing about the same, almost cancelled the appointment but decided to go through with it anyway.

 

Even with my low FVC the doctor felt it was safe as it only takes about 5 minutes. He mildly sedated me and left me in almost a sitting position. I was conscious the whole time. He sprayed a freezing compound in my throat and inserted the light/camera, found the right location and 2 minutes later it was all over - EASY.

 

Even the day after there was minimal discomfort - hardly knew it was done.....and I have only taken Ibuprofen. I don't plan on using it until I really need to, but it is in place for that day.

 

I post this so others might not fear doing this before it becomes an emergency. I encourage everyone to give this significant consideration before your breathing drops to a point it becomes dangerous and/or your swallowing gets critical and you start aspirating food and end up with pneumonia.

 

Please consider having this procedure done before you really need it. It will give you time to adjust to it before you are completely dependent on it. It really is NOT a big deal from my experience.

 

Just my 2 cents worth.