Patients Are Not Heavy

Two years ago, Medicare cut off the formula for my g-tube (feeding tube). I get by now with a Medicare supplement insurance through Blue Cross. They pay for my formula and supplies. The government does not. This was the Terri Schiavo issue. It wasn't about her feeding tube as much as the food. They (Florida) argued that they didn't have to feed her.

In these cases, know that "food" is a medically necessary formula. I also have a feeding tube.

Last year I sent a complaint to the UN. Taking away anything that is medically necessary becomes a violation and is a crime against humanity. The following, minus any comments, updates, and the song is what I sent.

Breaching Human Rights and Impeding Science

I write this despite being made vegetative after a severe brain injury. I also have a feeding tube. Obviously something scientific is going on. I can only assume my current status prevents investigation.

The United Nations is now involved. They can investigate. This is a global issue. Countries other than the United States look for direction. Medically providing nutrition constitutes feeding a person. Countries don't feed it's residents, but don't they provide basic healthcare?

 

 

Ill brothers and sisters aren't a burden.
I think we can feed them.
(By ill, I mean a feeding tube.)

Limited Vision

Don Herbert was blind.

Something you should know, I was blind. The man above, Don Herbert, was blind, most likely due to oxygen deprivation when his hose kinked. I had oxygen deprivation when my heart stopped. Sure I was already on artificial respiration, but that's no good without a heart, CPR, or other means to circulate my blood. My brain was deprived of oxygen available.

It will most likely freak people out that I come back to say this. I do, so get over it!

Now I couldn't be tested on a communication board if I can't see it. I failed communication and was made vegetative. My mother saw differently. She did super big letters on flash cards as I had some vision with my left eye. It wasn't a total Helen Keller situation. I progressed.

I now see with both eyes. I continue to be low vision, but I can see across the room.

I don't have a phone. The letters are too small to read. Besides, I couldn't hold it. I use a laptop. I see enough now.

11/15/2018 Update

My right eye was patched shut and I could only see in front of me with the left, I first had to wiggle the patch off. I closed my left eye and only saw light. This is what a pediatric ophthalmologist does when he/she patches the good eye.

 

 

A Most Unusual Situation

No one has ever seen before what is happening in me. The best way I can describe it is that I am slowly getting better. When I say slowly, I mean years. I'm still disabled, but no longer require life-support.

I had an AVM Stroke December 2002. I should have died that day. Usually, most strokes don't kill a person, but mine was caused by a rather large, hemorrhaging Atrial Venous Malformation (AVM). This thing was daunting and bled for most of the day. It wasn't stopped until I was taken to a third hospital.
 

After the stroke, I was in a deep, eyes-closed coma. To say that this was pseudocoma may not be right. Latter stages may have been, but I doubt initially. I did not move at all, and I did not breathe on my own. My eyes were closed and I was unconscious to the world.

Upon opening my eyes, I still did not move or breathe on my own. I understood that  I had a blood clot in my head that didn't kill me all the way. Since I was unable to do anything, I discovered that I could turn my head to the side. It felt like it was all the way, but it may have only been half way. This latter was most likely. I remember turning my head side to side as fast as I could. I was intentionally trying to dislodge that blood clot in my head.

It must have been a partial turn, because it was noted that I was shaking my head. I was given the medication Celexa and I stopped. Unknown to others, I was already familiar with this particular medication. I was a behavior specialist. This medication would work on behavior, not spasms. Shaking my head was intentional. I was not unconscious. This is why Celexa worked.

I had been made PVS, Persistent Vegetative State. This is unconscious. This just extended my eyes-closed coma. This diagnosis was wrong.

The rehab I was at went on to get all of my left-side body parts to move. The movements were not strong, but they moved. The rehab suspected Locked-In Syndrome. This would have been Incomplete Locked-In Syndrome, as there was some movement.

The diagnosis should have been Locked-In Syndrome, Incomplete. There is some movement with the Incomplete form. This disorder is conscious.

I was completely weaned from a ventilator. That was a big deal. It had previously been done with brain injury, but those were done within weeks of the incident. Mine was many months later. Usually by then, deficits were thought to be permanent.

Before I left the rehab, I had started vocalizing. I got a couple of good speech therapy sessions. Medicaid/Medicare does not pay for speech.  I had done general special education, so I was familiar with techniques but I was not a speech therapist. I would be switching to Medicaid.

After leaving the rehab, I was transferred to the other end of the state, Southern California, and was placed in a nursing home for quadriplegics who were very independent. That rehab had gotten my left arm moving and this new nursing home wasn't sure what to do about that so they ignored it.

I started to move my right hand after a month or so. I was discouraged and told not to move it. I later found out that my mother was lectured on how the home was paid for the residents to be disabled. I couldn't start moving my right side.

This is important. Nursing homes are financially set up for a person to have deficits. The more the better. Nursing homes are not paid for a person to get better. As a business, it's residents need to fail. A person goes to a nursing home to die. There will be exceptions, but a majority will follow this concept.

I had been using a communication board at the rehab. It's just a simple laminated piece of paper with the alphabet in large print. I've seen pictures used for children not reading, so this wasn't anything new. I gave up my board when I went to the nursing home. I had started vocalizing and I was going to learn how to speak like those who do total immersion when they move to a new country and have to learn a new language. (Sorry dear government that I don't swallow, but you didn't give me speech.)

I moved back to Northern California. I had surgery in 2004 to remove the blood clot in my head, the AVM. I immediately noticed that I was speaking and moving easier. To me, a barrier had been removed. Others may not have noticed but I did.

The surgeon explained that I would not see immediate improvement. This was a learning thing. He only cleaned up my brain. He only made the playground neat and orderly. It was up to me to play. (These are my words. I like to describe learning as play.)

"You are probably seeing neurogenesis. It's not a one time thing and it's done. It's a process. It's more like repeated neuroplasticity. In me it has lasted years." Neurogenesis Is A Process
 

That doctor at Stanford who did the last brain surgery didn't know my prior development. For me learning might as well have been play. The NDE, Near Death Experience, had put my body back in learning mode. THIS IS ONLY MY INTERPRETATION. (I refer to "Undead Genes" turning on at death. http://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html)

I did very well. I did extremely well! I started playing piano! I was a resilient child. My mother describes my early development in https://thoughtfulveg.blogspot.com/2018/07/a-resilient-child-grows-to-have-grit.html

Learning is play for me. I learn extremely fast and I do it for fun. Go back in school records and you will see. Kids don't normally leave high school and start college at 16.

Updated 10/27/2018

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.

Preconceived Notions

I was in a coma for 5 weeks. (My eyes were closed for 5 weeks. I think this eye-open coma is not a coma.)

Doctors didn't expect me to make it that far. Organ donation paperwork had been started.

The day life-support was to be removed, I opened my eyes. Everything changed. 
 

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Pseudocoma is also called Locked-In Syndrome. That diagnosis was ignored at the beginning of my stroke, and now there are problems. Not moving or speaking can be vegetative. It can also be Locked-In Syndrome, although this is rare. Locked-In Syndrome is conscious, I have limited speaking which continues to slowly improve and I write a lot. It sure looks like that is what I had. I can tell you everything that happened while I was "vegetative." And now? I'm still vegetative.

First, the writing, speaking, and increasing limited movement I am showing are all products of me coming out of Locked-In Syndrome. Second, I write. This appears to be Savant Syndrome, but it is not yet established as a diagnosing disorder. Gee, the rehab had suspicions years ago, but there was no where to note them. They successfully terminated my payee back then. I could manage money in a coma.

This secondary condition, Savant Syndrome, is harder to prove, for the condition. It can be seen in this here writing. At times it appears paranormal. The behaviors can't be explained, but the behaviors shouldn't be ignored. It will be hard to say that this writing doesn't exist.This condition needs to be made a diagnosing disorder. Then it can be studied. Even I am overwhelmed into believing I have paranormal powers. People unrelated to the situation need to look at it.

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What is death? I bring this up because it may not be what has been believed. I died in the beginning of my stroke.

I wasn't breathing and my heart stopped. There's nothing mystical about that. I was resuscitated. I am here now. That isn't mystical. In between then and now, that time is boring to me. So why is this a miracle? Leave something out and it will be.

We are finding that chemicals are being released in the brain when the heart stops. These chemicals may be responsible for the Near Death Experience, NDE. This experience can be mystical. The chemicals are not. I can see these chemicals as being responsible for great healing.

To a friend

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 We don't really know.