as small as a world and as large as alone, Wow, a doctor seriously said you should 'just go...

12:13pm July 23, 2015

Anonymous asked: Wow, a doctor seriously said you should 'just go home and die' to your face? I wonder if he would have said that if you weren't autistic. Holy crap did his head look like a talking blue puzzle piece from Autism Speaks? Because that is just...I can't even find words.

merchantfan:

withasmoothroundstone:

I think being autistic was part of it. What they kept saying was to “consider the alternatives” to treating my infections and starvation by getting a feeding tube. When quizzed as to what the alternatives were, they could give no alternatives. So we said “So in other words, the only real alternative to the feeding tube is to go home and wait to die of pneumonia or starvation,” and they admitted that yes, this was the only alternative they could think of, but that I should still “strongly consider that alternative”.
Mind you, if they’d simply decided that getting a feeding tube would not be helpful, then none of that would have had to have happened. They would have just denied the feeding tube outright, told insurance that I didn’t need the feeding tube, and I could have done nothing about it. But because i did need the feeding tube, they came into my room several times a day, every day I was in the hospital, and did everything in their power to talk me out of getting the tube.
Even though, by their own admission, a feeding tube would not prevent me from eating, and was wholly reversible, so even if I’d hated it or decided I didn’t need it, I could have gotten rid of it. And as for complications, they exist, and I’ve had a number of them, but even the worst and most deadly complications of a feeding tube aren’t more deadly than dying of pneumonia or starvation, so… yeah, that excuse didn’t hold much water either, given that I was getting pneumonia on such a regular basis that people were saying my lungs wouldn’t hold out a lot longer. (And I could drink about one can of Ensure a day at that point and had lost a total of about 70 pounds way too fast. So the feeding tube was going to serve two purposes.)
So – yeah. Basically they came in and tried to talk me out of getting the feeding tube, even though the feeding tube was the only option anyone could think of that even might work to save my life at that point. I did get the feeding tube and my health improved immediately and drastically, I stopped getting pneumonia except a couple times a year (which is still too often but is way less often), I gained some of the weight back (especially after I got diagnosed and treated for adrenal insufficiency which was also making me lose a lot of weight), and in general the good health I’ve experienced has been totally worth even the worst complications, some of which have been painful and others have been dangerous. (Right now I have an infection on my stoma site, which qualifies as dangerous, although I’m not sure if its location is coincidence or not – I’m on immune suppressants which makes me more prone to infections anywhere.)
But like, even if this infection wrecked my health or killed me, which I don’t think it will given how hard my doctors are fighting it, and even if the infection is a direct consequence of the stoma existing, which we also don’t know… that’d still be years of my life this thing has added before things got to that point, and that’s totally worth it for me. Everything has risks, medically speaking. But when “the alternative” is death, then “consider the alternative” becomes a very sinister thing to repeat at someone day in and day out, especially after you’ve admitted you know what “the alternative” means. They were basically trying to wear me down and get me to say “No I don’t want the tube.”
That’s so unethical!
Sidenote: Have you tried doing swallowing exercises etc to improve your swallowing? Has that helped or not improved it?

Swallowing isn’t my problem. My problem is gastroparesis – a partially paralyzed stomach. There’s no cure for that, and I’m not a candidate for the best treatment for complicated reasons.

Basically anything that goes into my stomach stays there, whether it’s food or bile. If it builds up enough, it spills up into my lungs and gives me aspiration pneumonia. So the G-tube half of my GJ tube, makes me able to drain my stomach regularly (like right now I’m wearing a suction drainage bag) to keep bile and anything else I put into my stomach (I sometimes drink soup broth for the taste, I don’t get any nutrition from it though because I have to drain it all out again) from building up.

And also because of the gastroparesis I’m not able to keep enough food down to maintain my weight (if my stomach gets full enough – which it can just from bile buildup with no food at all – I just end up puking, and most food doesn’t make it to my intestines to get absorbed), so I get food through the J-tube which goes straight to my intestines.

I do actually have swallowing trouble and esophagus motility problems (my esophagus moves too slow much like my stomach does), but they aren’t why I have a feeding tube. (They are why, prior to a feeding tube, all my meds had to be crushed up in pudding because pills just get stuck in my throat.) And I don’t aspirate enough from swallowing wrong for swallowing exercises to be worth my while. I mostly aspirate because the gastroparesis makes fluid from my stomach build up until it overflows and then heads into my lungs where I have to cough it out for up to an hour per aspiration (and then I almost always get pneumonia or pneumonitis and it goes downhill from there).