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.)