Tag Archives: hospital

I’m starting to heal here.

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The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

 

I’m out. (I aten’t dead)

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It's hard to write the sort of way I write on this blog so it has been hard to write about it here. Because my brain is very unrecovered from everything.

 

Went in. Got cured of pneumonia. That process was easy and quick for the doctors and long and harsh for me. Especially with the meds upsetting a stomach that had not seen food in weeks.

 

Which came of interest after they cured the pneumonia. Turns out I have gastroparesis. Partially paralyzed stomach. Hence more nausea and lower appetite over the years. Lost ungodly amounts of weight this time and they noticed finally that I'm burning muscle and his is very bad. Apparently it's likely I got this genetically tied to my mom's autonomic crap. Anyway it makes you empty slowly so you always feel full and a normal amount of food makes you throw up.

So lots of nausea meds later (I was literally one failed med away from a feeding tube being considered) I can now eat… sort of. A certain number of Ensure Pluses a day.

My brain has developed the ability to dream amazing food in amazing detail. So I no longer miss food as acutely. And I'm very happy Ensure exists.

But seriously of all the diseases to give a sort of former emetophobe, this… Gah. Well I already knew it as “chronic nausea”, its just the second hospitalization involving it was what it took for them to notice how bad it was. That and “I haven't eaten anything but broth and half servings of grits in weeks”.

 

My main problem is since I was there five weeks, my brain functioning isn't great. Started off with full bore delirium, then settled into what I have now. Low grade delirium. Caused by long term hospitalization. (the places cause it, they're perfect environments, think sensory deprivation) So my brain is… Sporadically operational. Continue not to expect much and be pleasantly surprised when much happen. Just still the gastroparesis is fairly severe even if managed, and the brain stuff is bad. I get lost in my own bed. The pneumonia is gone. Yay? That was so long ago now.

 

I'm very sorry to everyone who contacted me to ask if I was dead. I never intend to create that impression.

 

Ii have many things to say about what's wrong with hospitals and what hospitals should be more like. But I can't. Except one of them is causing delirium and then not detecting or trying to resolve it except in rare violent cases. Most delirious patients, like me, just lie quietly and you'd never know neon bugs were eating my eyelashes.