10:55pm March 31, 2013

The weirdness of being told that the death alternative is the one I should consider.

So here’s some of what’s been going on.

As my gastroparesis has gotten worse, I’ve been aspirating more food from my stomach because of the gas bubbles caused by the gastroparesis. I also haven’t been able to maintain even the minimal Iiquid diet I need to get enough nutrition in a day. When I aspirate the stomach contents, they cause lung infections every time, which aggravates my bronchiectasis and often turns into pneumonia. I’ve had five lung infections or so in the past three months and even more aspirations.

The main solution to this is to get a feeding tube called a g-j tube. The g tube would be used to vent gas from my stomach and the j tube would allow me to feed food directly into my intestines, bypassing the stomach. There’s not a lot of other options for me right at the moment when I’m hospitalized for pneumonia and I’m in danger of aspirating again at any time, it happens several times a month. We have to get the problem under control before we can do anything else because you can’t just keep on getting pneumonia without running a high risk of dying.

Every doctor since I got here has been talking about feeding tubes. I discussed it with them and chose the g-j tube. In reality I chose it months ago. There’s been talk about feeding tubes since I was diagnosed with gastroparesis last fall and again when the diagnosis was confirmed this winter. This talk isn’t new or scary. I’m more comfortable with the prospect of a feeding tube than anyone else in the room, aside from being a little afraid of the pain early on after the operation.

I was told that I would need a consult with a gastroenterologist in order to be sure what kind of feeding tube to get. I had a consult with a gastroenterologist with other people including my case manager and durable power of attorney for healthcare present either in the room or by phone. The gastroenterologist was not an expert on gastroparesis.

What became really disturbing was the gastroenterologist’s attitude towards my treatment. He kept trying to find ways to persuade me that I didn’t want a feeding tube. He said I had to consider alternative options. My DPA pointed out that the current alternative option was death from pneumonia. The gastroenterologist confirmed that he knew that was the only current alternative. Then he went back to what a big scary decision a feeding tube was, and other things intended to dissuade me from what’s known both with gastroparesis and other neurological problems causing these problems, to be commonly the next course of action.I simply can’t continue aspirating like this, getting pneumonia this often is a very bad thing. I’ve had a number of close enough calls I’m not interested in getting any closer.

But apparently this guy, even after “the alternative is death” was spelled out, not only agreed to this, but still kept pushing “the alternative”. And he was not the only person who appeared to know my life was in danger yet kept asking me to reconsider getting the tube, they’ve tried all kinds of ways.

I wanted to make especial note of this because its not a case of someone making a mistake. The alternative was spelled out, he knew what it was, yet he continued to push it and try to keep me from deciding on a feeding tube. He only gave in when it was clear I had decided I wanted to live awhile longer. There’s been a lot of grudgingness.

Not everyone here has been that awful. Some of them don’t seem to see their biases. Some of them seem to be really flagrant. Some of them tell me it’s good I stick up for myself every step of the way because only I know my own body. But there’s been a disturbing parade of people trying to convince me not to do this.

They tell me it’s hard to live on a feeding tube. It’s hard to live with eating so bad you feel like throwing up when you drink three Ensures a day, too, and it’s impossible to live indefinitely with getting pneumonia over and over.

They give me crap about what’s required for the procedure and whether I’ll be able to take it.

They try to tell me that it may not work. Every procedure may not work. This is the least invasive option in this situation. Cutting my stomach out could be done too but that’s far more invasive. Getting a G-J tube is totally reversible if it doesn’t work and it doesn’t prevent me from eating food if I want.

They play up the risks. There are risks. I’ve considered them. I’ve decided they’re less risky than aspirating every week or two. But overall in this day and age the risks are minimal compared to the potential benefits.

Luckily I have a DPA who is well versed in all of the medical terminology and can argue for me when I’m lost, or for that matter just too weak and confused and vulnerable to handle these conversations. Where every single time I have to push forward against this invisible force that seems to want me killed, and say “Yes I want to live, give me the feeding tube” no matter what I’ve been told just beforehand.

And luckily some doctors have been on the side of the feeding tube since the day I walked into the ER with pneumonia and a really ugly CT scan of my lungs from a few days prior.

But there are those who aren’t. And there are those who actually seem to, given explicitly the option of me dying, want me to choose that option. And that is scary. And I think how many other people in the hospital are getting treated like this.

Other evidence of disability discrimination is simply what happened when I was admitted. They at first refused to admit me without a 24/7 escort from the local developmental disability services agency. That basically meant they were willing to admit on the basis of disability rather than on the basis of who is sick and needs treatment. There are very strange things going on here.

They must be getting calls though because they’ve become a lot more conciliatory in the past few hours. They’ve said I’m definitely getting the tube now, the same guy who tried to talk me out of it before. I don’t understand this but I think they may understand people are watching their every move. What I worry about are the ppl here without those connections to call on.

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