Overcoming the Stigma of a Feeding-Tube

Updated 12/9/2019

More on that deleted video, https://thoughtfulveg.blogspot.com/2019/12/part-2-now-what.html



Updated 8/22/2019

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. It is a medicare supplement so it has to be an approved cost. It also gets a Medicare discount. I still have to do quite a bit and an unconscious person would not be able to do coordination. I personally do not have money. I have other sources, but coordination and management must occur.

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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. Gosh! I have seen videos.

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.

The following video is a parent teaching other parents.

This is DIY. Parents are resorting to telling other parents. Doctors are so few they have to. They may not have anyone in their town.

[The video was deleted!]

 
I have a regular g-tube, or gastrostomy tube.

 A diagram of a feeding-tube.

The doctor will use the balloon port to inject saline that will inflate a balloon you can't see. This balloon holds the tube in place. If the balloon pops, then the tube can fall out. This is what happened when I went to the ER.

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"They call themselves "tubies" – people with certain medical conditions who accept long-term feeding tubes as the best or only way to nourish themselves. With the feeding tube in place, many resume school, work and social lives once threatened by severe weight loss and malnutrition. For them, getting a feeding tube means getting their active lives back.

Between 150,000 and 300,000 Americans have long-term feeding tubes, says Lisa Epp, a registered dietitian nutritionist with Mayo Clinic in Rochester, Minnesota. Not being able to swallow food because of cancer of the mouth or throat is a major contributor." US News and World Reports

I don't have cancer. I had a stroke which caused dysphagia, or the inability to swallow. The American government says I am vegetative because I don't swallow. I am still in a coma. That's what vegetative is, a coma. Rather than fixing the problem, it is categorize and file away. (Speech therapy does swallowing.) I still feel this category is discrimination. The rest of me isn't in a coma.