Posted in family, medical

Thank you SO MUCH to my brother and my first mother. (Medical Monday)

For my birthday last August, I got one of these:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A blue GOMCO suction pump. There’s a lighted switch on the front, and also a separate light. the switch has three settings: Off, 90 mm Hg suction, and 120 mm Hg suction.

This is a GOMCO suction machine, designed for suctioning things out of your stomach. It has three settings, one off and two on. The two separate on settings are for two different levels of suction: 90 mm Hg and 120 mm Hg.

From that box where the pump lives and the on/off switch lives, a tube goes to a jar. The jar is glass and can be cleaned and sterilized easily. This is the jar:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A glass jar that says “Allied Healthcare Products, Inc.” sitting in a metal holder to stabilize it so it doesn’t fall over.

There’s another tube coming off of the jar. That tube connects to my G-tube.

What does all that mean?

Since my stomach is partially paralyzed, it doesn’t drain into my intestines properly. Some days it drains too slowly. Some days it doesn’t drain at all. All days this means that fluid builds up in my stomach and tries to travel up my esophagus. Then I am likely to aspirate that fluid. I don’t mean a little silent aspiration, although I get that too. I mean I wake up choking on bile, spend hours coughing it out, and end up with either aspiration pneumonia or aspiration pneumonitis as a result. My life was in danger and I got my feeding tubes partially to address this problem.

Unfortunately, while the feeding tubes helped the aspiration a lot1, the bipap made the aspiration worse. Anything that came up into my esophagus far enough, the bipap would blow straight down into my lungs. This is dangerous and has to be avoided at all costs. At one point they were even talking to me about a trach2. This happened every night that I used the bipap. Back to that later, it becomes important.

So the way the drainage system works, is I have a G-tube, a tube that goes into my stomach. It attaches to something with suction. The suction pulls the fluid out of my stomach, into some kind of storage device.

Until now, I was using one of two things that amounted to the same thing: A suction drainage bag, or a Jackson-Pratt drain. They’re both things that you squeeze. And then they slowly expand. And that produces suction. Which drains all the fluid out of my stomach. They’re built differently (one is an accordion attached to a bag and some tubing, the other is a bulb attached to some tubing) but they do roughly the same thing.

But the problem with both of those is you have to be awake to squeeze them.

So the moment they filled up, I’d aspirate, and all the stomach fluids would overflow out of the drainage system and all over me or my belongings. I put up with this, but I didn’t enjoy it, and I couldn’t use my bipap.

This GOMCO pump is amazing because.

It produces suction electronically. Constantly. You don’t have to keep hitting buttons or squeezing bulbs or accordions.

And it dumps into a giant container, compared to what i was draining into before.

So as long as the tubes stay connected there’s much less leakage.

And.

And.

And.

And.

And.

I’ve worn my bipap for 3 nights now, as well as part of the daytime (I have a very irregular sleep schedule without medication).

I have not aspirated once.

Not once.

This is me tonight:

Mel wearing a bipap with full face mask

You have no idea how grateful I am that this is even possible.

Thank you to everyone in my family who helped me get this vital medical equipment.

Being able to wear a bipap has saved my life more than once. The three most memorable times:

  • When I stopped breathing and landed in the ICU, they found other ways to keep me breathing and had my caregivers grab my bipap from home to use as a vent. They knew that its central apnea settings would make it detect absent or shallow breathing and provide the breaths for me, so they let it do that.
  • One time I went to an art gallery opening because I was one of the artists. Being around crowds of drunk people is stressful to me. They were all poking and touching me. Then when I got home, I got involved with a developmental disability self-advocacy event where we were put by the moderators into the position of having to justify our own existence. It was a debate where the other side literally wanted to make it legal for parents to kill children with developmental disabilities. Adults with developmental disabilities were pissed off about this and said so. It got heated, I was already stressed, and the effect on my adrenal insufficiency and myasthenia was muscle weakness (both conditions are made worse by severe stress) including some of the muscles involved in breathing. i had to wear the bipap to breathe deeply enough, for about a week. My pulmonologist said I did the right thing.
  • Just before I was diagnosed with adrenal insufficiency, it got severe enough that I stopped breathing entirely every night, for hours. This was due to severe weakness at the same time of day that you have the least cortisol in your body — around three to six in the morning. It wasn’t just my lungs, I couldn’t move any of my body. I’d wake up with my head flopped onto my chest and horrible pain shooting down my neck because I couldn’t lift my head and the muscles weren’t holding it up. Without the central apnea settings on the bipap I flat-out wouldn’t be here. There was nothing else that could’ve saved my life, because as hard as I tried, I couldn’t even push the wrist button I had to call for help.

Most people hate their bipaps. I love mine.

I love my bipap because it keeps me alive.

I think I am going to come to love my GOMCO drainage pump in the same way. It lets me use my bipap, which also keeps me alive. And the effects of untreated sleep apnea are so wide-ranging and severe I can’t even begin to cover them. I would take some aspiration risk over the risks of untreated sleep apnea. It was just that every night was too much risk.

But the untreated sleep apnea has been our biggest medical problem to solve, and if this keeps up the way it’s going, my doctor is going to be as thrilled as I am. It’s nice to have good medical news for a change. It’s too bad I had to do all the research and my family had to pay out of pocket for this, though.

And that’s a part of disability-related injustice I should talk about here:

We are not offered what we need.

I needed something like this years ago. Not only did nobody offer it, nobody even mentioned it existed. It was taken for granted that I just couldn’t wear my bipap anymore. My doctors didn’t have enough knowledge themselves to offer me the stomach drainage pump. This simply wasn’t offered even though it might save my life and I could’ve died in the meantime from aspiration or complications of untreated sleep apnea.

There’s something wrong with a medical system where this can happen. And does happen. All the time. Especially to disabled people.

Before this, I was literally thinking I’d need someone to sleep nearby me in order to squeeze any of the drainage devices I used up till now. Now I can just turn this thing on and as long as someone helps me dump it out and clean it (easier and safer than the drain bags and drain bulbs I used to use) I can do this.

I’ll still need the other drainage system for more portable purposes. Like I’ll still need drain bulbs when I go out of the house. (Or I can drain manually, but that carries its own risks.) But when i’m in one place, sitting there a long time, like when I sleep or an in bed for other reasons, then this drain machine is perfect.

Here’s a webpage that has the pump on it.

Official picture of the GOMCO suction stomach drainage pump with Allied Healthcare storage jar for fluids.

Also, this should tell you something: I got this in August and was only recently able to set it up and use it. We have been fielding so many minor and major crises medically, that we’ve had very little time and energy to spare. Not even on answering emails. I’m very sorry about this but right now we’re operating so close to capacity that it’s either hard or impossible for us to take on more a lot of the time.

But I’m really, massively excited about the combination of the pump and the bipap actually working. Most people hate their bipaps but I love mine and have been utterly frustrated by being unable to treat one of the most treatable conditions (sleep apnea) out there. I was starting to have all kinds of extra sleep problems including parasomnias, including confusional arousals3 that were terrifying both to experience and to witness.

But basically, if it took me this long to put together something this important to me, understand that my inability to get back to people isn’t because it’s not important to me. This is literally as important as breathing and I couldn’t get to it for months.


1 Yes, feeding tubes overall make aspiration worse. Please don’t “inform” me of this, it doesn’t apply to me. I’ll explain.

Aspiration is any time that you get things in your lungs that you shouldn’t, like food, water, fluid, etc. When you “swallow wrong” and choke food down the wrong hole, that’s a mild aspiration.

But aspiration comes in many kinds and severities. Most people are familiar with aspiration associated with difficulty swallowing (called dysphagia). Most of the time when people talk about using feeding tubes to avoid aspiration, and how it doesn’t work, they’re taking the overall statistics of everyone using feeding tubes, so most aspiration they talk about is from dysphagia.

I have some dysphagia. But most of my aspiration is from a combination of:

  • Gastroparesis: paralysis of the stomach
  • Gastroesophageal Reflux Disease (GERD): When stomach contents flow backwards into your esophagus.
  • Laryngopharyngeal Reflux: When things flow backwards even further up the esophagus into the throat and windpipe.

Meaning, it’s not coming from difficulty swallowing. it’s coming from fluids that are in my stomach. Some of those fluids are manufactured by my stomach. And then anything i swallow (and I try not to swallow anything other than spit, but sometimes in a moment of weakness I’ll eat or drink something). Anything that makes it to my stomach, just kind of sits there. And after it sits there for awhile, it builds up to a larger amount. And that larger amount is much more likely to travel up to my throat and down into my lungs.

I have mixed central and obstructive sleep apnea. I also have conditions that have required the central apnea settings on my bipap as a noninvasive ventilator. It is vitally important to my health that I wear a bipap. I have not been able to wear a bipap in years. Because as bad as the complications of sleep apnea? They’re nothing like as bad as the complications of a bipap blowing all your refluxed bile and stomach acid into your lungs every single night.

So what my G-tube (the feeding tube that goes to my stomach) does, is drains my stomach at the source. Anything in my stomach then goes into a drainage container of some kind, which must be emptied frequently. It has to be suction drainage, no other kind of drainage has worked for me at all. But it does work.

So my situation is not the situation of someone trying to use, say, a nasogastric tube, to avoid aspiration associated with difficulty swallowing. And our situations should not be considered the same statistically or otherwise. There are many kinds of feeding tube and many kinds of aspiration, and to understand whether a feeding tube will help your aspiration, whoever you are? You have to understand a lot about the reasons for the aspiration, the form the aspiration takes, the kinds of tubes available, and so forth.

A little knowledge is a dangerous thing.

And people who say that all uses of feeding tubes to fix aspiration are wrong, have a little knowledge.

Mind you, I don’t understand every part of this either. I’m not claiming medical expertise i don’t have. But I know enough to know why my aspiration and tube situation is different from using some other kind of tube (or any kind of tube) to treat dysphagia. I don’t know whether there are more effective ways to use feeding tubes against dysphagia and lss effective ways, or whether there’s no way. I just know that two tubes — G-tube to drain the stomach, J-tube to put food water and meds into the intestines — is pretty standard for gastroparesis and can when the conditions are right prevent aspiration. And of course this won’t be reflected in overall statistics on aspiration and feeding tubes, because most people who aspirate and have feeding tubes don’t have gastroparesis.


2 We decided against the trach for many reasons, but there was one big one. Apparently there’s a mechanism in a trach that keeps reflux from getting into your lungs. Apparently the amount of reflux I had meant that it would basically just go right through the mechanism and into my lungs and then I’d be aspirating anyway, plus dealing with all the risks that a trach involved. Even when I need a vent, which I sometimes do (not just for sleep apnea but also for congenital myasthenic syndrome, central apnea while awake, and a few other things including when my adrenal insufficiency makes my muscles weak during cortisol lows), my bipap works better anyway.


3 It’s where you wake up completely disoriented and often, for some reason, angry. I don’t remember what I’m like when this happens, but apparently I’m grouchy and rude most of the time. So I wake up to people who are already mad at me or scared of me and reacting to things I don’t remember doing but that certainly sound unpleasant. Or I wake up in the middle of shouting at someone. Whatever it is, I hope it goes away when the sleep apnea is better treated. It may not be as dangerous as breathing problems, but it’s scary.

Posted in medical

I don’t want to suffer the results of your medical fudging.

My DPOA/2nd mom just discovered the following situation.

So, I was in the hospital for awhile. I had low sodium (partially related to leakage from a couple of feeding tube sites) and two stress fractures in my spine. I was there a long time. They messed with a bunch of my meds. I let them. I figured the hospital was as safe a place as any to do it. I don’t like being on all these meds. And I know that some of the meds that treat symptoms of one of my conditions actually make the condition itself worse, so it’s a tradeoff and I understand why they’re careful.

But I was sure it was just an innocent mistake when I found out that Reglan had been dropped at some point from my list of medications.

Reglan is the only medication FDA-approved specifically for treating the underlying problem in gastroparesis. Gastroparesis means your stomach is partly paralyzed (probably due to neuropathy of the vagus nerve) and empties too slowly. Mine empties so dangerously slowly that I can’t get enough food without bypassing my stomach, and aspirate stomach contents even in an “empty” stomach because the fluid build sup and backs up into my lungs. That means two feeding tubes, one to drain my stomach, one to go straight into my intestines and avoid my stomach. I’ve got a third hole where a feeding tube used to be that got wrapped around my intestine and had to get pulled. It’s the old unclosed hole and the new feeding tube hole that leak too much. Not leak normally for a feeding tube, but leak so much it can get dangerous to me. This is partly due to long-term medical mismanagement even according to medical professionals who’ve discussed it with me.

Anyway, whenever I come in with excessive leakage, they decide they have to prove that they’ve done something about the leakage, and that they know what they’ve done.

Even if nothing changes.

Or even if they’re completely making things up.

So when I was in the hospital, I was getting several different lines of bullshit about why my hole wasn’t closing and why leakage was happening. I eventually got out of them that they flat-out didn’t know.

They seemed very all or nothing. I encouraged them to think about little things — that even having the support to eat by feeding pump (slow) rather than bolus feeding (stuffing things in with a syringe, bad idea with a J-tube because intestines don’t expand to hold food the way your stomach does), changes the amount of leakage I get. I said anything that either changes the leakage or changes the reaction of my skin to the leakage is an advantage even if it’s tiny.

So the things that really seemed to help, were differences in bolus-feeding habits, getting my meds on time and reliably (which itself requires it to leak little enough that meds don’t leak out again), and differences in skin protection care around the stoma sites.

But… we find out all these months after I get out of the hospital, that:

  • I’m not on Reglan/metaclopramide, and nobody told me or my DPOA or anyone else why I was taken off of it.
  • They are now claiming that pulling me off Reglan “stopped the leakage”.
  • The instructions in my chart read that if I am to “leak again”, I need to stop the Reglan.

In the time since the Reglan, I have struggled to eat anything at all, lost a lot of weight again (I know I don’t look it, but I’m on steroids, so…) struggled to keep up my electrolytes, and a lot of it because my guts are moving too slowly.

Reglan is the only thing in America I can take to make my guts move faster. Erythromycin doesn’t work (and wouldn’t likely work for my kind of gastroparesis, given that it works best for certain causes I definitely don’t have). Domperidone is not FDA-approved here even though I would love to be on it because I can only take a half-dose of Reglan due to motor side effects at full dose. (Domperidone doesn’t cross the blood-brain barrier but has cardiac effects. But in a disease with so few treatments it seems horrible not to allow it. The only other option is a surgery that’s itself dangerous and that I’m ineligible for.)

Reglan doesn’t just treat nausea or reduce acid like the other meds I take for gastroparesis-related problems. It actually makes my guts move faster. Given that my esophagus, stomach, and large intestine have all showed slowed rate at various times throughout my life, that’s kind of a big deal. The only part that’s never been slow is my small intestine, which I consider myself very lucky for. If you want one part of your guts working right, that’s the part you want working, because it’s where the food is absorbed the most.

So it’s a huge deal to take me off the one thing that might be speeding up all the slow parts of my guts.

And it’s an even huger deal to take me off it on the basis of something they have absolutely no proof of.

If they could prove that changes in Reglan, and Reglan in particular, changed the leakage, I would listen to them.

If they could prove Reglan was doing more harm than good, I’d listen to them.

But like usual, they didn’t even tell me, didn’t even ask me.It was a struggle in the hospital to even tell them how bad the leakage was. Because they kept insisting they could tell by the number of dressing changes the nurses did. When we heard that, the nurses and I both laughed, many times — we didn’t know how else to respond. We knew full well that the number of dressing changes was more connected to how many nurses were available than how many times the dressing needed to be changed. My tube leaked, and leaks, continuously. It pretty much never stops. You could change the dressings all day and not change them enough, many days. So instead we found ways to protect the skin — the ostomy nurses were great at this — so that even if it leaked, it was less likely to burn and do damage. Because bile and digestive juices on your skin just eats your skin, and that causes as much pain, chemical burns, and blisters as you might imagine. This is my skin on a good day:

My old J-tube site on top, bright red, and skin damage leading down to further skin damage around my current J-tube site, both from excessive leaking with no known cause.

Adding Reglan has not increased my leakage.

But the moment my leakage increases again — it changes in how much it leaks, but it always leaks way too much compared to how a tube should leak — they’re likely to blame the Reglan no matter what happens.

Because it matters more that they “solved the problem”.

Just like last August they “solved the problem” by upsizing (increasing the size of my feeding tube). Even though:

  • The problem had started resolving a little before the upsizing
  • Upsizing is known as only a temporary solution to these problems at best
  • Upsizing did not stop the leaking
  • I have been complaining about the leaking, as have my home nurses, ever since the hospital stay while they upsized, and heard nothing back until this hospital stay pretty much.
  • The upsizing was my idea and connected mostly to the fact that the tube I needed was only available in the next size p and my last tube had broken. By my idea, I mean the doctors had to get all stern and go away and Talk Amongst Themselves about it to see if they thought I was right before they’d do it, even though I’m supposed to be able to request my own preferred and usual type of tube after that point in time.
  • They were so confused about what was going on at the time, that they tried to stick a tube of the completely wrong size in the completely wrong hole until I shouted to stop them.
  • It was my idea and a “bad idea” until they’d approved it.
  • At which point it was their idea all along and it “worked”.

So last year sometime, something similar happened. They had to prove they’d Done Something About The Problem even though they didn’t really want to do anything at all :(the whole hospital stay was itself because they were fighting over whether anyone had to treat me, and who that would be if so). So they came up with the idea that the normal ebbs and flows of my leakage were tied to “their” idea of upsizing my tube. (And my tube was only upsized because the old one had started falling to pieces., it wasn’t originally intended to have anything to do with leakage. MIC-KEY J-tubes just don’t come in that smaller size, and the smaller size was very clog-prone and yucky.)

Anyway… so they did this. They said “Upsizing fixed it” even though “it” was never “fixed” at all. They took credit for an idea that wasn’t theirs — and I wasn’t fussy at the time as long as I got the right tube in the end. (I still have the same type of tube, which lasted a year before part of it started falling apart. Which is really good for a feeding tube.)

Later on they told me that by upsizing then ignoring it this long they might’ve created an impossible problem for me. That it might be too late now because they’d pretended everything was okay for so long that there might be damage done they can’t undo in several respects. If that’s true, then why do this again….

But that’s what they’ve done.

They’ve claimed the leakage stopped. It never stopped. I’ve been having continuous leak problems for a long time.

And they’ve claimed they know what “stopped” it — one medication among at least half a dozen they were manipulating all at once.

And now if I continue to have the problem that never stopped, they’re gonna blame something that I was still leaking, and leaking badly, when I wasn’t taking it.

And the thing is…

I need many nausea meds.

I was taken off several and I know why and it makes sense– they actually slow down stomach emptying even if they make me feel better. If I can live without them I want to.

But Reglan isn’t like that, it actually speeds up stomach emptying.

It’s important.

Phenergan and Dronabinol are my main nausea meds. They’re the ones that sort of hold things steady with my long-term nausea and keep me out of the hospital.

Zofran is a third, one that I take when there’s severe but short-term nausea. I don’t like to take it because it gives me headaches. But it works when it works, and I do take it sometimes.

I’ve been having so much nausea from small volumes of food in my intestines that I have had trouble eating a full meal. Right now I’m eating meals that may not be as good nutritionally as what I’d eat, but are easier to digest. Same thing you’d do if you were feeling sick and you ate by mouth. I just forgot to do the same thing by tube feed. So my roommate started making me sick food. It’s working, i’m getting food, and I’m working hard at eating. And it is hard work to get even a normal amount of food down. I have trouble getting a full 1000 mL a day. I’ve been anemic and protein-deficient and had problems with my electrolytes. I’ve had another hospital stay, I think, although I can’t remember what happened.

And all this time I had no idea they’d pulled my Reglan, let alone on purpose.

Let alone that they’re not being honest about what’s going on there.

Because it’s dishonest, on some level, to claim to have solved a problem that’s still there. Especially when you did a zillion things at once and you’re just picking one of them out of thin air to promote as the One That Worked.

And my GP is out of town, that’s part of how things have gotten completely out of whack. He has a good sub working for him, but I really need to talk to him in some way that isn’t third-hand on the phone. He doesn’t even know (nor do any of you, to my knowledge, because I haven’t been writing about it) what the latest med disaster has been or why, but had to do a whole lot of work to fix it by phone.

And like… I know that my horrible sense of time contributed to the med disaster.

But so have a long string of errors, oversights, wishful thinking, lying, and assorted weirdness from medical professionals. Not to mention neglect from the people who are supposed to be helping me manage my meds. The weird kind of neglect where they at the same time try to claim “We’re so worried you’ll hurt yourself getting your meds wrong” but they get your meds wronger than you do and don’t even notice.

At any rate, my meds got screwed up recently because my sense of time is much, much, much more deeply weird than I understood it to be, and I’ve been ignoring the degree to which epilepsy has affected everything about my life. And I ended up on a weird free-running med schedule where I ended up taking too much of half my meds and too little of the other half, pretty much. Not on purpose but because I can’t track time and was relying on other factors to track my meds. And because I was being expected to do my own meds, when that had been told to me as “You’ll only need this for emergencies.”

But seriously guys?

Don’t claim you’ve solved problems you haven’t solved. I’m sure it makes you look great on paper. I’m sure it limits some kind of liability or helps with insurance in some way or some crap like that. But it does me no good when you do it at the expense of my health.

And it says something that I didn’t notice I wasn’t taking one of my most important meds, even when I couldn’t eat.

And just… can I please just have the support I need to live in the body I’ve got, and not all this other crap I don’t need or want, combined with total neglect of everything I do need?

Because the rest of these many variations on medical neglect are getting old.

And mind you there’s lots of medical professionals who do care about getting it right, and nobody can get it right all the time even so. But there’s so many who don’t care, or who care more about other things than they care about this.

And they shouldn’t care more about proving “I solved this” than about whether their “solution” is just some random crap they did that actually hurt me more than it helped, and where the “lack of leakage” didn’t even happen.

(A lot of this was taking place when the hospital was trying to declare me a non-medical patient in order to discharge me early because they couldn’t find a rehab, among many other convoluted reasons. So I was dealing with things like oxygen sats of everything from the 80s all the way down to 75, where they had technicians come in and test multiple machines and multiple finger probes on me, all trying to show that the readings were wrong, but the readings were consistent the entire time. Because they didn’t want anything to be medically wrong, so even when they had solid proof something was up they’d ignore it when possible. So of course they could imagine “leakage stopping” as a thing, even as they were telling me out loud that the leakage would never stop and had not stopped.)

Yes, i’m writing about this for a reason: If it’s happening to me, it’s happening to others, and it’s bad and dangerous as a way to do medical care. I don’t know which people figured the leakage stopped — often it’s a game of telephone among people who never physically examine me or talk to me directly, but all discuss things with each other — but someone claimed it did and someone claimed it was the Reglan and I’ve been paying the consequences without knowing it.

I’m sick of me and my family getting the consequences for everyone else’s mistakes.

It keeps happening.

Nobody’s held accountable.

And the only punishment is on me and anyone trying to take care of me. And to be clear, there’ve been a lot of great people involved. Just not enough with enough power and knowledge, to get the right things done. (Quite often I notice the nurses pick up on something being way wrong but have to be subordinate to doctors. Which weirds me out because nursing and doctoring strike me as two separate types of medicine, rather than one type that’s “supposed to” call the shots and the other that’s “supposed to” listen. But what do I know, I’m just a patient.)

Nausea is getting old. Hunger combined with disinterest in food is getting old. And I have meds to manage these things with, but the threat of having the ones that work taken away for someone else’s wish fulfillment purposes is really getting old. Reglans’ close to all we’ve got in America and taking it away from someone with gastroparesis ought to require more proof than that. Including proof that the problem ever actually resolved itself. Which it didn’t. (Which we know because there’s a nurse in my home every single day to check my skin and leakage. There’s plenty of documentation that the leakage has gone nowhere.)

Posted in Death & Mortality Series

Medicalizing eating and drinking is more sinister than it sounds.

In my last post, I discussed the way food and water are medicalized when you get them through a feeding tube.  But the way I discussed it could’ve given the wrong impression.  I discussed it mostly in terms of its emotional effects.  The way it changes your relationship to food.  The absurdity of having to argue with doctors about how much water you’re allowed to drink.  When you have no medical reason for fluid restriction or any other actual excuse for them to act like they have a right to control something so basic.  The importance of eating food that you enjoy, even if you’re eating it through a tube.  The importance of food being emotional, sensory, cultural, all kinds of things besides medical.

Mel eating by holding an orange feeding syringe with an olive-green soup mixture going into a J-tube on hir belly.
Eating.  This is one way that I eat. That’s soup made from putting beans and vegetables (black beans, butternut squash, spinach, and guacamole, I think — possibly with some soy sauce and Sriracha) in a blender.  I’m eating it with syringes because there’s a clog in the line on my feeding bag, or I’d be eating it with a feeding pump.  Either way, it’s just eating, not medical treatment.  Food is not medical treatment no matter how the food gets into your body.

But in all of that discussion, I never discussed the most sinister part of food and water being considered medical.

When food and water become medical treatments, they become optional.  They become something you can refuse.  They become something a doctor, or an ethics committee (what an Orwellian name, given the way they so frequently treat disabled people), can decide is futile or unnecessary or medically inadvisable or something else along those lines.

In other words, when food and water become a medical treatment, then it becomes much easier to kill you by withholding them.

I filled out a living will awhile back.  Living wills are disturbing in all kinds of ways that most people don’t appreciate.  Most people see living wills as a wonderful way for people to indicate their future choices about medical treatments.  Most people don’t see the ways they’re set up to make it much easier to choose death than to choose life with a disability.  And to subtly nudge you in that general direction.  They’re not the value-neutral documents most people assume they are.  They already have values built into them that may not be the same values as the person filling them out.

I could obviously go on at quite some length about living wills. I’m not going to do it here though.  I want to talk about something very specific.

The structure of the living will I filled out basically went like this:  “If you needed this treatment in order to survive, would you want to die?”  The part that goes this treatment starts out with fairly noninvasive stuff.  And progresses through a series of medical treatments, in order from what the creators of the document consider least drastic to most drastic.

Anyway, the first treatment I remember having to answer questions about was a feeding tube.  Which does make sense within their structure:  Feeding tubes are pretty noninvasive and completely reversible.

But it disturbs me.

It disturbs me that a feeding tube is considered something you should have to decide whether to live or die about.

It disturbs me that food and water are medical.

Because that’s where it all starts.

Where food and water are medical.

Mouth Magazine reported once on a woman who’d had a stroke.  She had a living will saying she wouldn’t want continued medical treatment if she had brain damage.  She changed her mind once she had brain damage.  She wasn’t considered competent to change her mind.  They decided food and water were medical treatments — in her case, she didn’t even need a feeding tube.  She tried desperately to get food and water, but they prevented her from doing so, saying they were honoring her wishes and that she was incompetent to make her own decisions.

Mouth Magazine had this to say about itself at one point:

During the last ten years, it is fair to say, Mouth has lowered the level of discourse on the subject of the helping system. About time, too.

Mouth brings the conversation down to street level, where well-intentioned “special” programs wreak havoc in the lives of ordinary people. People talk about calling a spade a spade. We call Jack Kevorkian a serial killer. And when maggots outnumber nurses’ aides at what others call a “care facility,” we call it a hellhole. We say it out loud: if special education is so darned special, every kid in every school ought to have the benefit of it.

About Mouth Magazine

In that spirit, I will call what they did to that woman exactly what it was:  murder.

All the bullshit about honoring her wishes is bullshit.  She clearly wanted to be alive.  To declare someone incompetent to decide they want to survive, to declare someone incompetent to fucking change their mind… that’s some high-order bullshit.  Dangerous bullshit.  Deadly, murderous bullshit.

And this bullshit, and this kind of murder, happens daily.  One person I know who worked in the medical system said the disturbing thing to her was that she was complicit in at least one murder without being aware of it.  Because of the ways they warp your thinking to make it seem like something, anything is going on other than the intentional killing of another human being.

Except it is the intentional killing of another human being.

And often, it starts with the medicalization of food and water.

Food and water are not medical treatments.

Food and water don’t become medical treatments just because they take an unusual route into your body.

A feeding tube is just like having another mouth.  It’s just that the mouth is located in an odd spot.  That’s all it is.  It’s a mouth that opens directly into your stomach or your intestine, instead of going down your esophagus first.  (Then there’s NG and NJ tubes, which do go down your esophagus, but they’re still just another slightly unusual route for food to take into your body.)

There is nothing about a feeding tube that truly makes food and water medical treatments.

There is nothing about disability, including brain damage, that truly makes food and water medical treatments.

This reclassification exists in part to make it easier to kill us.  Not that every single person who medicalizes food and water has that in mind.  But that’s part of the point behind the reasoning’s existence.  And even when it’s not initially intended that way.  Anyone who wants to use it that way can easily just pick up the situation and use it in exactly that way.  Once food and water become a medical treatment, starvation and dehydration become withholding medical treatment rather than starving or dehydrating someone.

You can’t even have an honest conversation about the issues involved here, when everything’s replaced with a medical euphemism.  Because we’re actually talking about murder (the intentional killing of another human being) and suicide (someone intentionally killing themselves).  And you can debate the ethics of murder or suicide in various circumstances till the cows come home.  But you can’t even hold the debate in an honest or straightforward fashion when murder and suicide or even just killing are replaced with withholding medical treatment.

And when food and water are only considered medical treatment for a certain class of person (usually some subgroup of disabled people), I call that deadly ableism.  

So medicalizing food and water is never just an annoyance or nuisance.  It’s like a weapon:  Someone can absentmindedly carry it into a room and leave it lying around for some reason that has nothing to do with killing.  But then someone else can pick it up and seriously injure or kill you with it.  So it’s never not sinister, disturbing, and dangerous. 

And that’s important to always keep in mind:  Once something fundamental to survival is considered medical treatment, it can always be withheld much more easily without raising many eyebrows.  Hell, people who advocate withholding it can paint themselves as champions of your human rights rather than people trying to prevent you from exercising your human right to, well, food and water.  It makes it way easier to turn everything on its head without anyone noticing what’s going on.

Mel with headphones on, smiling and holding up a green coffee mug of kombucha with a feeding syringe sticking out of it.
Drinking kombucha and listening to country music doesn’t become a medical treatment just because a feeding tube and syringe are involved.

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

Posted in joy

Lindy gets head scritches.

This is after a lengthy conversation that covered topics such as:

  • Do tubes enjoy having liquids pushed through them?  Given that this is what they are designed for, they might well enjoy it.
  • Do tubes ever get bored?
  • Do the multiple available attachments help alleviate boredom?
  • Do tubes ever have a problem with being a tube, or are they free of that particular kind of angst?
  • What do tubes do for fun?
  • Do tubes enjoy having a wider variety of things put into them?

So then I just decided to give Lindy some head scritches because I’d do that for any pet, and that was a bit of a heavy conversation to spring on hir out of nowhere.

BTW to clarify:  When I say that I see objects as alive, this is not what I mean.  This, and anything with Lindy as my pet, is me playing.  Objects being alive is something much deeper and less “They’re just like humans and other animals.”  Objects are their own things, and belong to themselves.

The closest in all of this playing that I’ve gotten to the reality of how I see things is wondering about whether objects that are designed by humans and other animals (humans are far from the only animals who make tools and houses and such, after all), enjoy doing what they are designed to do.  Where ‘enjoy’ is a bad translation for a concept that doesn’t really exist in English.

I live in an apartment, for instance, that genuinely seems to enjoy doing what homes are supposed to do:  Having people live in it, making people comfortable, protecting its occupants, etc.  It both takes those things very seriously and enjoys doing them.  Which is interesting to me especially given that I know enough of the history of this building to know it was not always apartments, it was once a factory or something like that.  But I have never before lived in a home that so much wants to be a home and dedicates so much of itself to being one.

And I have lived in some very messed-up homes.  The house I grew up in had a terrible personality that seemed to encourage violence, strife, and being trapped.  Despite learned helplessness so bad that I often wouldn’t know I could run to get away from abuse, I dedicated a lot of my childhood to spending as much time outside that house as possible. And so did a lot of people.  Nobody really liked being inside it very much, which is probably one reason we got it so cheap.

Places and things do have personalities.  They’re not human personalities, they don’t work the way humans work, and anyone who uses the term ‘anthropomorphism’ and condescends at me about this risks getting virtually trout-slapped.  But ‘personality’ is again, the closest way to translate something that doesn’t translate well.  And some places have bad personalities.

The apartment I live in is the first place I’ve ever lived in that feels like a home.  Apartment, house, converted factory, doesn’t matter, this place wants to be lived in and wants to fulfill all the functions of a home for human beings.  It loves its inhabitants.  (Love, in this sense, is not an emotion.  Sorry for all the word explanations, but things like this are all very bad translations at best.)

And there are ways the tube is alive, but being a pet is part of a game I play with things sometimes.  The way I play such games may be connected in some way to my belief that everything is alive, but they are expressions of playfulness.  For lack of a better word.

I’m saying that because a lot of people when they hear I think “objects are alive” automatically think “anthropomorphism” and proceed to behave in extremely irritating and condescendng ways.  And by the way, please don’t throw the word ‘animism’1 around in these contexts with me either, especially if you’re gonna do so in a way that manages to be both racist and ableist at the same time.  Which it usually is.  Especially when you not only paint it in the most simplistic light possible, but describe it as a phase human beings go through before we really understand the world… I’ve had so many condescending explanations from so many people who have no idea what I actually mean, that it’s gotten ridiculous.

Anyway, cute tube gets head scritches!!!!  And that’s what matters right now.  Silliness is an important part of life.   TOOOOOOOOOOOOOOBS!


1 Also I don’t call myself an animist, just so you’re aware.  There are many reasons.  One is who came up with the term, why, and how it’s normally used.   Another is that whenever people tie me to an ‘ism’ it seems to come with ideological strings attached, so I’d be wary even if I didn’t think of the term as nearly always racist and often ableist.  (The term itself, not the intent of the people using the term, mind you.  This isn’t an accusation towards everyone who says it, just why I personally won’t use it on myself.  Words mean different things to different people and this is not a request for people to use words differently than they alrady do.)

Posted in joy, medical

Meet Linden, my pet feeding tube ^_^

So um.  Sie doesn’t have a name (well sie does by the end of this post, I decided to name hir), and I’m not sure sie’s gonna have a name.  I haven’t named tubes since Enid — long story.

But I swear with the way they move, these little MIC-KEY buttons can look like they’re alive.

So meet my tube. Sie’s a 14 French MIC-KEY button jejunostomy tube, 3.5 cm stoma length.  I think sie wants to say hi here:

I think sie’s adorable.

And yes, sie moves.  Mostly peristalsis, the natural movement of the intestines, but it makes it look like sie has a little head that peeks around.  Most of the time when sie’s in hir dressing sie moves a little less, which is good (you don’t want a J-tube spinning, sie has a long tail inside of me).

Sie’s modular.  Which means that the part you can see is just the part that attachments can clip onto.  There are different extension kits for different types of syringes and feeding attachments and situations, and all of them are pretty cheaply replaced.  Which means if one of your extension kits breaks, you don’t have to replace the entire tube inside you.  You just replace the external extension.  Usually when I’ve had MIC-KEY button J-tubes they have needed internal replacing only every 6 months or less, and in my case we were usually just being cautious and could’ve gone longer.  For some people they last years.

Because there’s not a big giant dangling thing coming out of you, low-profile tubes like MIC-KEY buttons are a lot safer.  They don’t catch on things and yank out very often.  They don’t need to be taped down to prevent movement.  And the ones that do need to be taped down, taping doesn’t really prevent all movement, so they move more and that can put wear and tear on your stoma.  They’re also really good for young children because children are less likely to see a giant dangling thing and play with it and yank it out by accident.

Here are some of my tube’s extensions:

An ENfit syringe putting coffee into a MIC-KEY button J-tube.
An ENfit syringe putting coffee into a MIC-KEY button J-tube.

This one goes to an ENfit connector.  ENfit connectors were designed for everything from tube feeding attachments to syringes, to make it so that it’s impossible to confuse a feeding tube with an IV, a mistake that can be fatal.  So I like the idea of ENfit, although it was messed up pretty badly when they tried to make it universal for all existing feeding tubes and it wasn’t, and neither was their alternate solution.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector to one side of the connector.

A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.
A dual ENfit extension on a MIC-KEY button J-tube, with a tube feed attached through a purple connector, and a feeding/medication syringe attached to the other side.

This one goes to an ENfit connector but allows two connections.  This means you could have one part connected to your feeding pump, and at the exact same time be putting meds in the other part with a syringe, without having to unplug anything.

The cath tip syringe attachment for the MIC-KEY button J-tube.
The cath tip syringe attachment for the MIC-KEY button J-tube.

This one allows a normal 60 mL cath-tip syringe to put things into your tube.

Photo on 8-19-18 at 10.03 PM
A two-port tube extension, one for a cath tip one for smaller medicaion syringes, for a MIC-KEY button J-tube. There’s a 20 mL medication syringe attached to the smaller port, with hydrocortisone in it.

This one allows two sizes of syringe — cath-tip and a smaller kind that are often used for medications.

And there are others in various shapes and sizes, those are just the four I use the most often.

Here is a video showing how easy it is to put in the extensions.

My old tube was not modular.  It was a 12-French MIC* J-tube, and it is one of my least favorite tubes.  But it is the only one they will implant surgically, then you have to wait six weeks minimum before you can switch to the tube you want.

A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it's nowhere near that bad now.
A picture of my old feeding tube (the one that finally got swapped out to a decent tube on my birthday), which was not low-profile or modular or just about anything else useful other than just being a J-tube. My skin looks horrible in this photor for reasons, it’s nowhere near that bad now.

As you can see in the photo above, the tube is all one piece.  If one part breaks or wears out or stretches beyond usability or gets clogged, you have to replace the entire thing. It’s also a constant safety hazard because no matter how well you tape it down (and taping it down creates its own safety hazards that are different) it’s gonna still be able to move and get caugh on things.

So my new tube… maybe I should give hir a name, I’m just not sure what name to give hir.  I guess I’ll call hir Linden for now, and see where it goes.  I’m just tired of not having a name.  So Linden, Lindy for short.

So here are the official photos of the old MIC tube i had, and the new MIC-KEY tube.  It’s night and day, even though they serve the same function.  The following is a Halyard 12 French MIC* Jejunal feeding tube.  And really sucks as feeding tubes go.

This is the tube that gets surgically implanted by default. It's not a very good tube, it's flimsy, it's not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I've had long experience with this kind of tube and most of it bad. It's a Halyard MIC J-tube, 12 French. Most of what's in the picture goes inside you so you don't see it, you just see the floppy part hanging out the top.
This is the tube that gets surgically implanted by default. It’s not a very good tube, it’s flimsy, it’s not modular, and I was infinitely grateful to be able to get it replaced on my birthday this year. I’ve had long experience with this kind of tube and most of it bad. It’s a Halyard MIC J-tube, 12 French. Most of what’s in the picture goes inside you so you don’t see it, you just see the floppy part hanging out the top.

The following, on the other hand, is the kind of tube Linden is, called a low-profile feeding tube or a MIC-KEY button.  This kind of tube is modular and generally wonderful.  Again, the long tail you see is mostly inside of me.  The tail is part of what makes J-tubes (intestinal feeding tubes) different from G-tubes (stomach feeding tubes).

Screen Shot 2018-08-28 at 10.30.20 PM
A Halyard MIC-KEY button jejunal tube shown as the tube part on the right (most of that tail is inside of you so you only see the part above the balloon generally) and then some tube extensions (which help you put things into the tube) and otherequipment on the left. A MIC-KEY button is modular, so the part that is in your body is an entirely separate piece from the part you use to put things into your body. The internal part takes a procedure to replace (you could do it at home but it’s not recommended), but it rarely needs replacing. When the external parts wear out, you can replace them quickly and cheaply without requiring any procedures or even contact with medical people. The lack of dangling parts contributes to how long-lived these tubes tend to be.

So meet Linden again:

A MIC-KEY button J-tube on a large somewhat scarred-up belly with ostomy bag behind it.
Say hi to Linden again!

Linden with hir makeshift paper towel dressing.
Linden with hir makeshift paper towel dressing.

And I hope you find hir as cute as I do, even though a lot of people would find it weird to call a feeding tube cute.  I kind of wish I could give hir decorations, but there’s no way that would either be safe or stay put, so no point.  But I can name hir Linden and show people the way sie moves.  ^_^

 

 

 

Posted in Death & Mortality Series

“Are you at peace with your decision?”

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

What do you imagine is happening when you see this scene:

I am lying in a hospital bed, very ill with aspiration pneumonia and starvation.  I have a visitor from out of state, someone who recently lost her father to pneumonia and wants to see me just in case.  A doctor walks in.

This is a teaching hospital, so he’s not alone. He’s followed into the room by a line of assorted med students, residents, and the like.  I call them ducklings, because they followt he main doctor around in a line.  Someone online said “Not ducklings, doclings.”  So now they’re doclings.

So the pulmonologist — not my pulmonologist, just a pulmonologist — walks into my room followed by a gaggle of doclings, who fan out around my bed.  And the first thing out of his mouth is a solemn, “Are you at peace with your decision?”

I say yes.

He repeats his question, “Are you at peace with your decision?”

I say yes.

This keeps happening until he solemnly leads the doclingsgout

What would you assume was going on there?

Because I’d assume that I’d chosen to end my medical treatment and go home and die, or something along those lines.

But that’s not what he was doing.

His question was about whether I’d be at peace with getting the feeding tube that ultimately saved my life.

Guess what, doctor?

I’ve had feeding tubes for six or seven years now.

I’ve had my share of complications.  Infections, abscesses, a tube wrapping around my intestine.

I.  Still.  Want.  My.  Tubes.

My tubes are life, not death.  When you get a feeding tube, nobody should ever treat it as if you’ve just chosen to die.  But they do.

For my 38th birthday dinner, I had soup:  Sweet Pea (sweet peas) and Super Greens (spinach, broccoli, green peas, and coconut).

Mel eating green soup through hir J-tube.

Then I had kombucha.

Photo on 8-16-18 at 1.25 AM #2

I enjoyed all of it.

And I’d never have reached the age of 38 without my feeding tubes.

So the answer to the question is still the following:

Yes, but your question and the way you’re asking it could get someone killed.

Stop treating people choosing to live as if we’ve chosen to die.

Posted in medical

Beware of medical fatalism.

I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was.  It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.

I had a GJ-tube at the time.  This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines.  This means that part of it winds through the inside of your stomach into your intestines.  But the stoma (hole) itself is just a single gastrostomy hole.

A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.
A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.

Anyway, I had two separate and unrelated problems.

One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.

Two, a giant nasty abscess had appeared on my stoma practically overnight.  Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere.  To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.

I was seeing a surgeon to see what, if anything, he could do about the abscess.  Which, at this point, had been there for two months.  (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)

His immediate response:

“I can’t do anything.  Even if I could get rid of it, you’d just get another.”

This seemed like an odd statement to me.  I’d had my tube for years and never had more than minor skin complications.  I got compliments all the time on how well I took care of my stoma.  This was the only time something like this had happened.  And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.

But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.

“I don’t see the point in that.  Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”

That’s when I realized a pattern.

And the pattern wasn’t that he actually would have said this under ordinary circumstances.

The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it.  Then he wrote off any problems as inevitable and likely to recur.

Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.”  Yes, he probably will get another anyway.  You still treat ear infections.

I’ve never gotten another abscess so far.  It’s been years.

I’ve never gotten another ulcer so far.  It’s been years.

But even if I did, those aren’t things you leave alone if you want to live.

And that’s the thing.

If you have a feeding tube, some people see you as half-dead already.

If you have a developmental disability, some people see you as half-dead already.

I knew a guy with a developmental disability who had to go to the emergency room for a bad infection.  His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state.  That makes him an unperson to most medical professionals.  They told his staff, “He won’t live out the night,” without even examining him.  Then they tried to walk out without ordering treatment.  She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly.   This was at least 15 years ago and last I heard he’s still alive.

That’s standard.

I’ve gotten it more times than I can count.

A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time.  This meant to the doctors that she was likely to die soon anyway so what was the point?  She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times.  That is not something she should’ve had to say.  Her medical decisions matter no matter what the average lifespan is.  She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).

This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate.  Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway.  Where the treatment is more damaging than the condition.  I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example).  But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.

And in the wrong situation it can kill you.  Or lead to lots of work and unpleasantness and illness that could be totally avoided.

Feeding tubes are definitely one area where this happens a lot.  Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway.  That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all.  That any complications shouldn’t be fixed.  Either because they’ll come back right away or because they can’t be fixed at all.  And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?

These are all potentially fatal assumptions.  Fatal fatalism, I guess.  If you have any kind of unusual medical equipment or conditions.  Or if you are in any way not valued by the medical profession.  Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk.  Always think of the ear infection analogy.  If you weren’t better off dead to them, would they treat this?  Do they repeat this advice no matter what your actual problem is?  This is not valid medical advice, this is prejudice dressed up as medical advice.  And it’s an excuse not to treat you.  And it could kill you.  So be careful.

Posted in Developmental disability service system

The agency matters more to the agency than you will ever matter to the agency.

A GJ-tube, a type of feeding tube, drawn against a brown background.
A drawing of my first-ever feeding tube, a GJ-tube.

I’m gonna illustrate this one with another medical story.

Years ago, I needed a feeding tube.  Two feeding tubes, actually.  The details aren’t really important.  Other than I was gonna die without the feeding tube.

The hospital didn’t want me there.

First, they told me because I had a developmental disability I would need 24/7 care from my local DD agency while in the hospital.  A call from my DPA to Patient Relations fixed that massive illegal move.

Then, they tried to kick me out after a day even though I had bad aspiration pneumonia visible on a CT scan and was really sick.  My pulmonologist and GP stopped them.

Then, they started coming into my room multiple times a day to try to persuade me not to get a feeding tube.  They knew I needed one, so they couldn’t just deny it..  I’d been told on admission I needed one.  They admitted I wouldn’t survive without one.  They were trying to talk me into going home and dying.  And I was weak, and I was sick, and they were wearing me down even though I was stubbornly saying I wanted the tube.

They said all kinds of things.  I wouldn’t be able to take care of it.  I was just like an infant and would yank it out trying to play with it.  I would have no quality of life.  My caregivers wouldn’t be able to cope and I’d need a nursing home.  My life would essentially be over anyway.   I needed to ‘consider the alternatives’ (we checked, they meant death).  And this was happening multiple times a day.

So my DPA basically called in a social media campaign to get people to contact the hospital and tell them to stop discriminating on the basis of disability, and to stop pressuring me not to get a tube that was clearly medically indicated, etc.

It worked.  I got my tube the next day.  Grudgingly.  Unnecessarily painfully.  But I got it.  I’ve been happily living with tubes ever since.  And my care is actually easier, not harder.  And I’m still alive.

But the first thing a caseworker from my DD service agency told me when I got home?

“You shouldn’t have done that.  Do you understand you are jeopardizing our agency’s good relations with the hospital?”

facepalm
Mel doing hir best facepalm/wtf gesture.

I almost died and did what I had to do to survive.  They were more worried about their agency’s social relations with a hospital that has a bad track record treating people with developmental disabilities.

Some agencies are better than others.

But when you’re a client of a developmental disability agency.  You have to understand something very clearly.  No matter how much people care about you as a human being on a human level.  No matter how much they’ll side with you when your interests and their interest are in line…

…It’s still a rare agency office worker who will put you above the agency when push comes to shove.  If there’s a conflict of interest, almost always they will side with the agency.  There are exceptions.  You can’t count on them.  Be cautious.

 

Posted in Being human, Nature

Living stumps and the living dead: Feeding tubes aren’t unnatural

Mel wearing a hat, jeans, and a Green Mountain Self-Advocates t-shirt, with feeding tubes showing, standing next to an IV pole with a feeding bag on one side and a potted succulent on the other. There is an elaborate crocheted wall hanging showing different parts of the forest floor on a redwood forest. Including soil, water, slime molds, fungus, tree roots, plants, slugs, a snail, a newt, redwood cones, and random forest debris.
They say this is unnatural…

I need a couple of feeding tubes, and sometimes a chest port, to stay alive.  One of the feeding tubes drains fluid out of my partially paralyzed stomach so it doesn’t overflow into my lungs.  The other feeding tube goes straight into my small intestine, and you put all the food, water, and medication in there.  That bypasses my stomach, which doesn’t empty properly so most things just sit there or backflow into my lungs instead of being used.  People can need feeding tubes for lots of reasons, but in my case it’s to get around the fact that my stomach resembles a dead-end street.  Luckily you don’t really need your stomach for digestion.  Small intestines do it just fine.

There’s a lot of things people don’t understand about feeding tubes, but one of the objections I hear most often is that living with a feeding tube is ‘unnatural’.  It’s modern medicine run amok, going too far, keeping people alive who’d be better off dead, and lots of other cheery bullshit.  And the very idea creeps people out because it’s supposedly artificial, unnatural, and disturbing to even think about.  It’s hard to know where to begin with that kind of thing, but I have a lot of objections to the idea it’s unnatural.

First off, human beings using technology to keep each other alive is the most natural thing we could possibly do.  We are built to have compassion for each other, to take care of each other.  We are built to solve problems, both alone and as groups.  We pass on our knowledge and build on it from generation to generation.  We are skilled at making and improving on technology.  These are our natural skills, our natural instincts, and there is little more natural for a human being than using them.

Feeding tubes also aren’t that recent an invention.  They date back at least to ancient Egypt, where they were tubes stuck up people’s butts to try to get food into them that way.  Butt feeding tubes were the norm until people started figuring out how to use a tube down the throat to bypass the windpipe on the way to the stomach.  They used those for everything from torturing and force-feeding prisoners to making picky children eat food they didn’t want.  Butt tubes were still around though.  When  President Garfield was shot, they were able to keep him alive for awhile using a butt-based feeding tube.

It wasn’t until anesthesia made surgery possible and antibiotics reduced the infection risk, though, that people really made headway with the kind of feeding tubes I have.  These are implanted through a hole (stoma) directly into the stomach or intestine.  When done properly, these days, this is reasonably low-risk and reversible.  The hole heals if you take the tube out.  Even while the tube is in, it’s perfectly possible to eat by mouth if you’re capable of it.  Nothing about the tube itself will prevent you from doing that, only whatever condition is making feeding difficult in the first place.  So if you have the feeding tube and don’t need it anymore, you can get used to eating again before having it removed.

It may be obvious that I have a problem with the way people divide things into artificial and natural.  Lots of animals use tools and technology.  Lots of animals do things to solve problems.   We’re not different there.  The things we make are just as natural as the things beavers make.  Whether we, or beavers, cause problems with the things we make, is a completely different question.  But just the act of making things isn’t defying nature.  It can’t be.  That’s not possible.  And it’s perfectly in line with every natural human instinct out there.

But for people who find what human beings do hopelessly unnatural… here’s this other thing that happens:

A living stump next to a tree that is keeping it alive through its roots.
…I don’t know anyone who wouldn’t call this natural.

In case you don’t know what you’re looking at, that’s a couple of Douglas fir trees.  One of them is a regular tree, the other is a stump.  The stump is alive.   Even though it has no leaves to make food out of, the stump is still completely alive.

How is this possible?  The roots of the two trees are connected.  The tree sends nutrients to the stump, so that it doesn’t have to make its own food.  This can keep the stump alive indefinitely.  This happens all the time.  It’s tube feeding for trees.

Douglas firs, like the redwoods depicted in the wall hanging in my first photo, are a social species of tree.  Many social species of tree connect at the roots, either directly root to root, or through a network of roots and fungus.  They can send signals, nutrients, and other chemicals through the roots.  They even show preference for family and for trees that — however trees decide this — are friends.  Just because they’re a social species of plant and work very differently from us, doesn’t mean they don’t share with humans the desire to help each other survive.

I mean, I’m talking in terms that sound very human, but there’s no real words out there for saying what trees want and how.  All life  wants to be alive, though.  For social species, that often involves helping each other out.  That goes no matter what kind of life form you are and how different you are.

I’ve never met even the most ridiculous nature purist who’d claim trees are unnatural.  And if it’s not unnatural for trees to use their time and resources to feed each other when they can’t make their own food, it’s not unnatural for humans to find ways to do the same.  Including feeding tubes.

So don’t call my feeding tube unnatural.  It’s as natural as the redwood forest in the crocheted wall hanging next to me in the first picture.  And using technology to help each other survive is one of the most natural things human beings can possibly do.  All these tubes and machines don’t have to horrify you.  I’m a living stump, not the living dead.


Further information:

You can read all about the history of tubefeeding and more in Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhar O’Gorman.  I’d recommend the first half of the book much more than the second half, however.

The first half is well-researched information on tubefeeding in general.  The second half reads like a cross between a sales pitch for blenderized diets and regurgitated Michael Pollan stuff.  I use Osmolite for my main nutrition and supplement it with blenderized vegetables to get things you won’t find in elemental formulas.  But when you’re reading along and the book starts referring to food the author thinks is bad for you as “edible food-like substances” and all the recipes specify the vegetables need to be organic, seriously?  I don’t want orthorexia when I already can’t eat, thanks.  It does tell you how to properly blenderize food for a feeding tube, though.  It focuses on G-tube feeding and doesn’t mention the steps you have to do (like using a chinois) to make sure blenderized food can’t clog a longer and narrower J-tube, though.

If you’re interested in the social lives of trees, the following TED talk may be of interest:

Here is a link to a page with a transcript:  How Trees Talk To Each Other.

Books regarding plant communication, cooperation, and senses:

The Hidden Life of Trees: What They Feel, How They Communicate – Discoveries From A Secret World by Peter Wohlleben.  This is a combination of personal observations from decades in a German woodland, and scientific discoveries backing up those observations.  Living stumps are described in detail.

What A Plant Knows: A  Field Guide to the Senses by Daniel Chamovitz.  This one describes the sensory experiences of plants in a way that is pretty easy for a layperson to understand and dispels many popular myths about plant senses.  The things described are in line with the scientific knowledge at the time the book was written in 2012, most of which is likely to surprise people.  There is a lot of bullshit out there about plant senses, this is the real thing as far as we know right now.

Do not confuse these books with The Secret Life of Plants, which is largely garbage.  Be careful of information that comes from that particular book, it’s made its way into popular understanding but most of it is nonsense or misleading at best.