Note: I am writing this as a "filler" diary to be available when another Kosability author is unavailable to do a scheduled piece or when there is no one scheduled for a given week. This means that by the time you see this, my personal circumstance may have changed. --Julie
There is something profoundly terrifying about the inability to swallow (dysphagia). In my case, it was particularly awful because my Myasthenia Gravis would cause me to reject food in fairly dramatic ways. Not only was I having difficulty swallowing, but I was also having trouble with keeping the food down when I could swallow it.
The latter mostly went away, but the former has persisted since mid-December. I will not go into details about the trouble keeping the food down. Suffice it to say that if your muscles don't work to swallow, they don't work well in the other direction either.
It took me a long time to get a solution to this. The road was rough, and during that period I was slowly starving to death, while still having to hold it together enough to push for what I needed simply to survive.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
During this period, I was hospitalized three times, during which they attempted to feed me through a nasogastric tube which is a term which has probably made you wince already, as it's exactly what it sounds like: they shove a tube through your nose, down into your stomach and pump liquid nutritional sluice through the tube into the stomach.
Human beings can only take so much of this, I suspect. I received this sort of tube at least four times, and more than once, they had to try twice to do it. Once, a doctor got it in, and it hurt like crazy, but I was coughing so much he couldn't understand when I said that I think he got it in okay but I needed a moment to catch my breath, so he took it out to try again.
That was fun.
But I digress.
During one stay in the hospital, a member of the surgical team I'd worked with before for my thymectomy (I'm going to call her "Doctor Awesome") stopped by just to visit. I asked her about the more long-term tube that is placed directly through your stomach. She offered to do it if I needed it done-- said it wasn't "minor" but pretty easy compared to the other surgeries I'd had when she was one of my doctors. I was inclined to do that at the time, given how much trouble I was having with the nasal feedings, but got talked out of it again and again.
It took me some time, but after losing 20 lbs since the first December admission (this was early January-- that's 20 lbs in about 3-4 weeks), they finally realized I needed this because even though they were convinced my swallow would improve, it never really did.
But before they finally decided it was a good plan, I tried to contact Dr. Awesome to ask her if she were still willing or available to do the surgery. The neurology ward told the nurses I didn't need to contact her and ordered them not to page her for me. They did this for several things, running completely counter to my wishes and requests for consults and attempting to control who could and could not visit me in my own room, which is why at some point, when I get my voice back (that's a whole other piece-- I'll write it eventually), I am going to have a nice long conversation with quite a few people in the hospital administration, that may or may not include several words not generally spoken in polite company.
But I digress...
So here's the thing about these tubes. Once you've got it inserted properly and it's arranged so that you can get food through it, no one tells you a whole lot about exactly what to do. The nurses handle it through the industrial sluice I mentioned before. Of course, since the sluice is one size fits all, it's high carbohydrate, which means it totally screws with my blood sugar, requiring me to use quick acting insulin, something I never do except when in hospital. (Hospitals seem to treat diabetes not as about nutrition or health, but entirely about insulin. I.e., sugar too high? Give insulin until it goes down)
And then you're sent home, with all this equipment: syringes to administer medicine (crushed and dissolved in water) and a feeding pump to deliver the many cans of industrial sluice they've provided for you.
I'm not the one who had to deal with all that part of it-- that was my sweetie. For the first week, we stuck with the sluice, administered insulin as needed because of the sugar. Did feedings the way the nurses did, which was quick feedings during the day, and one very long 1,000 calorie feedings done slowly overnight.
One day I was realizing that that made no sense, the same time the sweetie was. No one eats naturally like that. We eventually moved to three 500 calorie feedings during the day, whenever plausible. Mostly these are done with the pump, but a bunch of research showed us that we could do some of these through the same syringes we used to do the medicine. I.e., we could feed me more quickly through the tube when necessary.
I can't remember exactly when, but somewhere in there we got pretty fed up with the sluice and started experimenting with real food delivered through the tube. One great resource is the blog You start with a tube..., which talks about all sorts of things related to tube feeding. We learned some from that and a lot from our own resources. The things this guy blends for tube feeding are amazing. At one point, he tube fed himself a can of sardines.
As an aside, another nice little piece about the feeding tube comes from Roger Ebert who talks not just about the technical aspects of it, but the social experience of having to eat through a tube. As of the time I write this, I am mostly homebound, so I haven't dealt much with the social aspects yet, but I expect to when I return to work in the immediate future.
It helped that we already owned a VitaMix blender, which is an extremely powerful blender that gets the food into a very consistent texture, allowing us to convert real food into food appropriate for tube feeding. The additional piece of kitchenware we purchased was a high-quality juicer, allowing us to make juice from pretty much anything we wanted.
And the fact is, my sweetie is awesome at this. She has software to track nutrition contents of various foods, so she's devising blender compatible meals for me that are of the appropriate balance of fats, carbohydrates and proteins. She's counting calories to try to make sure I get the right amount each day. She's adding in digestive enzymes to help me process the food well and adding specific ingredients to improve my ability to digest overall (celery root is, apparently one such ingredient).
The fascinating thing about all this is the separation of taste from food. This is not normal for me (or probably anybody). Some of what I end up "eating" is very tasty, and I can put a little on my tongue even if I can't swallow, but some is designed more for the proper nutrient composition and wouldn't taste as good if I tried to eat it. I find myself craving the taste of certain foods: chocolate, for one, which is the obvious choice, but curries and spices and pesto and cheese are up there, too. Specific meals from specific restaurants come to mind.
I also find myself wondering if my tastes will change when I finally can eat again: will I be less acclimated to certain tastes? Will I find myself craving things that my belly has grown to eat that I might normally not eat? The idea, for example, of drinking apple juice doesn't appeal to me at all. I like apples, but most apple juice I find sickly sweet and disgusting. But I'm getting apple juice through the tube from time to time. Will I start to want it?
And what about when I do return to work? Will people find it weird that I don't "eat" with them? That I have to go someplace private to get food into my body? I can't imagine myself doing the syringe thing in front of other people.
The most surreal aspect of all of this, though, is probably how normal it's become. I have a pump that is set up to deliver me food and I take it in passively. How weird that the work of eating (though not of the prep, for once again, I credit my awesome sweetie) is completely invisible to me.
I look forward to being able to eat by mouth again. I do not know how long that will be. Myasthenia Gravis is kind of an evil, monstrous thing in some ways. It could be days, weeks or months before I can try it again.
But until then, I have the tube. I'm no longer afraid of starving to death. I'm no longer so weak I can barely function. I'm managing to survive like this, as best I can.
2:24 PM PT: Quick note: two fairly important (at least to me) factors have changed since I wrote this.
The first is that I am, at least part-time, back to work. I'm still not able to handle a lot more than that, but it's a start.
The second is that while I still can not eat much of anything by mouth, we are no longer using the pump. We've switched over to all food being hand delivered into the tube through a syringe on a more "normal" meal schedule (3 meals/day, breakfast, lunch, dinner, usually with a snack or two at some point during the day). It's proved to work much better on my stomach and doesn't leave me as tethered to a medical device for hours at a time.
2:42 PM PT: I forgot to mention one thing in this piece. So I've lost a lot of weight as of late, for reasons that are probably obvious. I lost about 20 lbs after my surgery in November, because they put me on an ultra-low-fat diet for a few weeks. This more recent (Dec-Jan) bout with dysphagia, prior to getting the surgical tube, brought that total to 35-40 lbs. Since then, I've lost a little more weight, but at least now it's not starvation loss. All in all, since mid-September, I've lost 45-50lbs. It was a surreal experience realizing that I was no longer "obese" but merely "overweight."
Right now, I actually weigh less than I've weighed since I was a junior in high school. It is all very odd to me.