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Anyone dealing with long-term dysphagia and chronic cough?
Head & Neck Cancer | Last Active: 23 hours ago | Replies (17)Comment receiving replies
“Is it possible to manage dysphagia without resorting to tube feeding?”
In my experience, it is. I was on a feeding tube for a while but it kept falling out and I kept getting aspiration pneumonia, which the feeding tube was supposed to prevent. I stopped having it replaced after it fell out for the fourth or fifth time.
I had my esophagus stretched and I am now on a diet that is either “soft mechanical” or liquid. I also am taking 100 mg doxycycline daily to prevent pneumonia. I expect to be doing this for the rest of my life.
I have decided that I will not get a feeding tube again unless I am permanently in a nursing facility that can handle all the problems that plagued me when I was trying to use a tube at home. The people who sell you on the idea of getting a tube don’t tell you half of the downsides that come along with it. It’s not what I consider to be user-friendly technology and it’s not easy to get support when the technology fails.
Replies to "“Is it possible to manage dysphagia without resorting to tube feeding?” In my experience, it is...."
When I had chemoradiation treatment for nasopharyngeal carcinoma stage IV in 2006, I had to have a feeding tube inserted to my lower stomach - and it was ok in that it lasted me throughout my treatment.
My view on feeding tube is that if I have to be dependent on the feeding tube to survive - then it takes the meaning out of being alive.
At the moment, I am still managing with swallowing at home (I avoid eating in public and in gatherings due to issues with having to cough out food when food gets stuck in middle of throat) - with dysphagia exercises and hoping to keep my swallowing and speech from deteriorating.
I live on my own - and trying to adapt and take a day at a time.
It is a tough journey - take care to all !!
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Thank you so much for the reply. We need to hear the other side of the story as well in order to make a better decision. Good luck to your healing journey.