I am sorry that becoming a "tubie" is a part of your new normal. I too am on a permanent PEG, five years this month. I hope that, once the shock and disappointment you feel at having your world turned upside-down have abated, you will find that living with a PEG is not so bad. I enjoy preparing food for myself ~ the textures, smells, chemistry of blending. I still relish having meals with friends and family, whether at home or in a restaurant. I do use a syringe and bolus feed, which allows for ease of movement and travel.

I note your dx of COPD: I have the chronic, progressive lung disease Bronchiectasis. Aspiration for those of us with lung disease, as you know, can be deadly. Let's keep on living! A PEG introduces a new challenge, as much emotional as physical. As I have followed your posts I have come to know a guy who can continue to "live life LARGE."

The Inspire website has a great online support community for those of us with feeding tubes, and there is plenty of good information elsewhere on the web. Let me know if I can he of help.


Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.