One of the problems my husband has is with eating/swallowing. He often chokes on his food as it "goes down the wrong tube". The food goes into his lungs rather than his stomach. Now, thankfully, as his medical testing showed he has a strong cough reflex and he can successfully cough the food back out of his lungs, but that does not take away from the helplessness I feel as it's happening.
I haven't been able to link it's occurrence with anything in particular, but I want to say it's only gotten worse as time goes on. I remember when I first noticed it. He would cough once or twice while we were eating and then be fine. That progressed into not simply a cough but you could hear that he sucked his food down his lungs and was trying to cough it back out. At first, I thought "Crap, that's scary, are you ok?" and it stuck out in my mind. Well then it happened again the next evening. I started to notice it happening more often and so I posted something about it in one of my facebook groups. One of my friends, a nurse, told me about how dangerous "aspiration" can be.
I had to research that. So I googled something like "aspiration and TBI". That is my usual way to research anything concerning Dean, to put the concern next to the words "and TBI" to see if there is a noted link between the two issues. I have found many things that the doctors never told me had anything to do with TBI all by googling it. The doctors treat every symptom as an isolated island problem all on it's own. Oh he has trouble swallowing, just look down while you swallow and that should do it. No mention to me how that is something seen in TBI patients.
Since google linked the two issues together, I called the VA and told them about his little problem and that I was worried that he could get what I found online, something called Aspiration Pneumonia. They set up a swallow study for him so they could see how his body was working. Since I know that to help any claim you have with the VA you have to show medical proof of the problem, I knew that him being seen (even if there was nothing they could do to cure him or prevent him from choking or getting pneumonia) would be helpful to have in the medical records. So we went ahead with the test. It was pretty painless. They had him eat various foods while standing in front of an xray machine that could take a film of him actively eating. It was useful that with one of his swallows he actually choked so she could assess the strength of his reactionary cough and whether or not he could expel the food from his lungs on his own. He could.
As I said above, I have only noticed this coughing on food getting worse. It happens with more frequency and lasts a lot longer these days. Today was a good example of what these most recent episodes have been looking like. You can kind of hear when it happens. For a brief second you can hear that swallow that went wrong and it turns immediately into violent coughing. The body knows that food doesn't belong in the lungs! The coughing lasts from 3 to 5 minutes and by the end becomes a more wheezy sounding cough. Then the coughing calms down a bit but only as long as he breaths slowly and carefully and doesn't try to talk. With talking, all bets are off, and he's right back into the coughing. Tonight he had to not talk for about 30 minutes in order to talk with no coughing.
I feel just helpless the whole time. I know that little Dean and I need to just not look at him and be quiet and still. He is feeling humiliated and out of control and a little vulnerable at these moments and those feelings can easily explode into an angry outburst if we don't follow this unspoken protocol.
Dyphagia (Swallowing problems with TBI)