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1:56am March 15, 2013

➸ "You don't need this junk. You need a cat.": Feeding tubes.

feliscorvus:

youneedacat:

So I saw my doctor this week or was it last week. Effing memory problems.

But anyway I did see him. And we spent awhile talking about what to do if I ever come close to needing a feeding tube again like I almost did this fall.

I am so glad he respected my choices. I’ve had a nasogastric tube…

Oh geez yeah, NG tubes sound perfectly horrid. And something tells me you’d manage to rip it out in your sleep even if you could somehow avoid doing so while awake. :/ Glad your doctor is actually listening, despite the awfulness of the conversation. No matter how you may or may not end up needing to be fed eventually, it’s really better to have plans in place vs. have people fumbling around and doing awful things to you because they don’t realize that “defaults” just don’t work for some of us.

Also, I can most likely chat tomorrow if you’re up for it. Been another really busy week but chat tends to restore my brain, not deplete it.

Yeah. My DPA says the way things have been going, I’m only a crisis or two away from needing a j-tube. It’s installed below the stomach to bypass it altogether. And you just stick food into it. The really cool thing about a j-tube is that you don’t need to use it constantly. You can use it when you have to and then eat when you are able. It’s not a full time thing.

And while I know there are serious risks, I think if and when I finally get one it will be a relief. Like oh wow I finally don’t have to worry so much about how much I throw up. The tube ensures that you’re getting at least some nutrition. And AFAIK you can use Ensure with it just as I think you can with a g-tube. (G-tubes go into the stomach. J-tubes are lower down.)

The risk of course is infection. I think I know people who have tubes and openings cut all the way down their digestive system – colostomy, cecostony, j-tube, g-tube, etc. Comes from knowing so many disabled people. So despite the problems with them – and I have seen it up close, infections that hospitals refuse to treat because you’re disabled and its extreme measures to keep you alive and stuff – I kind of consider them normal and have wondered for years if I’d need one someday, oddly enough.

What’s weirding me out is today I started working with a social worker on a living will. And one of the first questions was “If you need a feeding tube to stay alive, will you allow that or would you rather die?”

And I kind if gawped at the question. Because like the feeding tube has been a serious conversation with my doctors since last fall. They almost inserted one. But then they found me Marinol which was like a wonder drug. But so far gastroparesis has been progressive and even with a bionic gut my DPA and I see a feeding tube sometime in a likely future for me.

So this question isn’t abstract to me. They’re asking me whether I’d rather die. And there’s not even a choice. Of course I want to live. How could a feeding tube stop me? How the fuck could a feeding tube even be considered extreme measures? To me it’s so common and normal – and so close to something I might need – that the question scares me more than the tube does.

It also scares me that most people see a feeding tube as extreme. It’s not extreme. It’s just a tube. It’s not necessarily the first thing a person wants. But it’s not a huge deal. Lots of disabled people have them.

But if I get one, will doctors start asking even more questions about whether I’m allowed to live, when I get really sick and go into the hospital? It happens to a friend of mine. Somehow when you get one you cross a line even more disturbing to people than the wheelchair or the communication board. People discuss people with feeding tubes all the time saying they should just die, as if it’s so self-evident they don’t need to explain themselves.

I also worry for all the twenty something healthy nondisabled people who have never even contemplated living in a wheelchair, let alone a feeding tube. They’re confronted with filling out their living will. They see a feeding tube as terrifying and absolutely an extraordinary measure. They say they don’t want to live if they need one. But then they need one. And their will has taken effect. And they can’t change their minds even though they’ve realized they want to live. And so they die, wanting to live, their death reinforced by the really weird system that makes feeding tubes and respirators seem extra scary. It happens more often than you’d think. Because people don’t realize their own will to live until they’ve crossed all the lines they thought they’d want to die at.

So I feel really weird knowing I’m at the planning stage for something I may get in the future, that is considered the first “line” you cross in the living will where you might want to die. That many doctors consider to be a stage at which they get to dictate your life and death.

And yet… and yet… It just snuck up on me. I was just merrily going along. Then I couldn’t eat and I knew something was wrong. In the hospital the talk about feeding tubes just crept up, took me by surprise. I never thought that my loss of the ability to eat solids would so rapidly turn into a gastroparesis diagnosis that rapidly turned into a discussion of feeding tubes versus anti-emetic drugs. It happened so fast.

And now I am scarily vulnerable to hospitalization. We are trying another med. Then it’s seeking out the experts to see if I can get a bionic stomach. And then maybe that feeding tube in the future. People don’t like to imagine it. But I see it in a lot of close possible futures and so does my DPA. And deep down my doctor must see it or our conversation would have been much less concrete and detail oriented.

It’s been an intense year.

And I will try to chat tomorrow too.