Trauma. Anger. Sadness.

Like pulling teeth. Writing this blog post has been incredibly difficult and I’ve been at it for months. It’s about the process of getting my feeding tube and nausea and a realization I will get to at the end.

So now I have a feeding tube.
Finally.
I think I left it too long and made things unnecessarily hard for myself. I’ve been getting additional nutrition through my port for a little over two and a half years. That was totally ok and made sense for a while because I was still able to eat a fair amount (though not quite enough to support myself and definitely not enough to regain the weight I had already lost). But as the disease progressed eating became more difficult and time consuming and eventually I started getting nauseous. That was in January 2016 and yes, that means I’ve felt nauseous for almost 3 years. Which sucks. I now assume that the nausea was related to my stomach and intestinal system being… well, empty. Too empty too often and too long. Feeling nauseous didn’t exactly make me eat more, obviously. So, despite a few ups and many downs, the problem got pretty consistently worse. But I was adamant about not wanting a feeding tube (like I said in “A decision and a compromise.”) and to explain that, I have to (and kind of want to) talk about an old trauma. For lack of a better word. I usually don’t like being so dramatic but in this case… seems appropriate. Here’s the story: My Oma (that’s German for grandma) had a stroke when she was almost 91. She survived but never recovered and had to move to a nursing home, where she “lived” in a bed in a room with three other ladies, was given a feeding tube and… well, was kept alive. It was horrible and I’m sure she didn’t want that. But she didn’t have an advance health care directive written and signed, telling us and the doctors what to do in this case. And the stroke had taken away her ability to talk (along with her ability to move the right side of her body). She eventually got an infection and passed away almost one year after her stroke.

The second part of this trauma happened in spring of 2015 and I wrote about it in Dealing with potential lung issues: How NOT to do it. And… How. It’s. Done.”. A “breathing specialist” nurse from hell told me that I needed to be admitted to the hospital to get a breathing mask and while I was there I might as well get a feeding tube… oh, and a breathing mask may not work, so I should start thinking about a tracheotomy. That horrible appointment connected a feeding tube to a tracheotomy in my head to create my ultimate nightmare: being stuck in some corner of some nursing home unable to move or utter a sound and most importantly unable to die. Being kept alive with minimal care for maximal profit. So, when I wrote my advance health care directive, I specifically stated that I wanted neither a tracheotomy nor a feeding tube. And I stuck to that, got my port, and everything was fine. For a while. Except for the nausea which I thought was inevitable.

Then suddenly, at the beginning of this year, I started to worry about my heart: Pumping an extra two liters everyday suddenly seemed like a lot. My doctor and the Professor assured me I had nothing to worry about, my heart was (and is) perfectly healthy and strong. But… I don’t know, somehow eating through my veins didn’t feel right anymore. And I started wondering if my nausea was related to my stomach and intestinal tract being too empty. And then I realized: a feeding tube has nothing to do with a tracheotomy. Like nothing at all. They are two completely different procedures. D’uh. I felt like such an idiot. Deep breath (‘cause I can!), forgive myself, I was traumatized after all.

I’ve been thinking about this a lot, how was it possible that this stuff didn’t get talked about for so long? The answer is because I have ALS. This disease makes communication so difficult, while constantly throwing shit at me that needs to be talked about. So things that don’t seem immediately important get forgotten. Possibly the worst aspect of having ALS.

Anyway I still needed some time to wrap my head around the concept of a feeding tube. It’s a hole where there shouldn’t be one. It is. Can’t argue with that. It took a few weeks of thinking and talking it through to get to the conclusion… in my little situation… what’s another hole?

So, I picked an anthroposophical hospital, which was a great idea, they were absolutely amazing, and got my feeding tube. And… the nausea got worse than ever. My stomach was upset, to say the least. Pissed. The first week I felt like my stomach was constantly yelling at me: “Are you out of your mind?! A hole?! Here?! With food coming through?! What the…?!” Things eventually got a little better. A very little. The past 6 months since getting the feeding tube have been incredibly difficult, lots of experimentation with different types of food, ups and downs, and lots of nausea. And frustration. And a realization.

I don’t know how to explain the amount of suffering those almost 3 years of nausea have meant for me. I feel either nauseous or I’m scared of getting nauseous. I have zero appetite for anything. I can’t even imagine having an appetite for anything. After almost 3 years of nausea my relationship with food is so far from normal, that I don’t know how that can ever be reversed. Physically I would absolutely be able to swallow things like apple sauce, mashed potatoes or pureed soups, and that would be really good for me. But in reality the thought of tasting and swallowing anything makes me gag. I can just about drink water. I could drink tea or juice, I suppose… but I don’t feel like it.

My realization was this: All of that could have been prevented. If only a doctor or nurse had said to me: “Of course you’re nauseous, you’re not eating enough. Your stomach and intestinal tract are too empty to function properly. You need a feeding tube. Why don’t you want one? But that’s crazy, a feeding tube has nothing to do with a tracheotomy, you can have one and not the other. Please reconsider. Your nausea will only get worse as long as your stomach is so empty.” Or something like that. Nobody did. I have registered nurses taking care of me everyday, my doctor comes at least every other week and I have my appointments at the ALS clinic, nobody noticed the obvious. BUT after I got my feeding tube, everyone started saying: “Well now that you can eat more, the nausea should get better.” Really?! Now you’re telling me?! And… I wish. But it doesn’t work that way: my stomach and intestinal tract… I don’t know, have forgotten how to do it. Or are pissed and don’t want to cooperate anymore. Anyway, the past 6 months since getting the feeding tube have been an absolute nightmare as we continue to experiment with different kinds of food and at this point I can handle about 300ml of food… per day. And so far every “expert” has turned out to be just a salesperson trying to sell their particular brand. Right now I have “experts” from a company that isn’t affiliated with any brand of food but rather has access to all brands and should help me figure out what works best for me. They’re ok but… I’m not convinced yet and they haven’t really found a solution either. But after almost 3 years of nausea… I guess I have to be patient. Which is increasingly difficult because I’m so angry. And frustrated. And… I don’t know, kind of disappointed and sad. About 2 years ago an older nurse (“nurse ashtray”) said that I was the best cared for patient she had ever seen. And I really felt that at the time and it gave me a sense of security. I don’t have that anymore. I feel completely alone. It’s probably a good thing that I’m aware of this now because I obviously wasn’t very well cared for, I just thought I was. And I wonder, what else is there that I’m doing wrong or that could be so much easier but no one is telling me… And I’m exhausted.

But… the thing is… in a way this realization isn’t helpful at all. It doesn’t give me back the almost 3 years with nausea. And it doesn’t give me back the muscles I lost with the weight I lost. And it doesn’t make the process of getting my stomach back on track any easier. All it does, is make me angry. So, I have to let it go. I know that but I don’t know how to do it. Yet. I’m working on it.

So there.

You know how I like to end on a positive note? That’s really hard this time but I’ve got something: if you know someone who has a feeding tube, google “mic button” or “MIC-KEY feeding tube” or in Germany “Freka Button” and tell them about it. I got my “button” instead of a regular feeding tube and it’s so much more comfortable! It’s basically a feeding tube with a detachable tube, so I don’t have a tube dangling from my stomach all the time. A great invention, I highly recommend it. Anything to make the lives of those unfortunate enough to need a feeding tube a little easier.

PS: At the end of my last blog post about my daily routine, I hinted that my routine might change and I was going to write about it “hopefully soon”. I was talking about the feeding tube, of course. And, well, my daily routine is all over the place these days. So, I will write about it later. Probably much later.