Overcoming the Stigma of a Feeding-Tube


How long can a person live with a feeding tube? I don’t know. I keep resetting the timeline.
The feeding-tube is so common to me that I don’t even think about it. I get mine replaced at least once a year. Lately, I have been doing twice a year as I have been using a new source for getting tubes. Every time I get a new feeding tube, the timeline resets.

“Since I am “aware”, although my diagnosis says I’m not, I can replace my feeding-tube through my Medicare. My diagnosis is “Semi-Vegetative.” That sounds different. I obviously talk now, so vegetative doesn’t cut it. Doctors aren’t sure what to call me.” http://thoughtfulveg.blogspot.com/2018/08/tube-out.html

I have a Medicare supplement insurance to pay for the feeding-tubes and formula. Medicare and Medicaid don’t cover the cost. Feeding-tubes and formula are a medical necessity for me.

People with family who have a feeding-tube are learning how to do the changes themselves. Usually it has been parents. Most parents will do anything for a small child.
There are very few doctors/nurses doing this. Wait times are horrible and a few hours can mean the stomach hole closing if the old tube is out (The hole inside that you can’t see closes really fast. The hole outside remains.) Then you have to do surgery all over again.
I have a full-size tube, and once waited all day at the local hospital emergency room. I now carry an extra and last time I went to the hospital, I talked the doctor through the process of changing the tube. My hands are too shaky and I can’t see when laying down. I can’t do this myself. I have a local internist, but he was on vacation. My old tube was only held in place by tape, so I had to go to the ER.

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