From November of 2019 to February of 2020, I lost about 60 pounds. By mid-February when they finally admitted me to the hospital, I weighed at best, around 90 pounds. I could no longer hold down water, I hadn't been able to hold down food for several weeks, and I could actually feel parts of my body shutting down. It was scary.
My doctors agreed that the best option to keep me alive was a feeding tube. A feeding tube is a medical device to deliver nutrients and medication directly to the stomach or small intestines. It's primarily used when a person is unable to eat or drink enough to meet their nutritional needs for short or long periods of time. We knew this was my best option, but when we started discussing what type of tube to use, I had no idea there were so many options.
While feeding tubes are meant to save or preserve your life with nutrition and hydration, many patients experience a decreased quality of life due to the limitations on daily activities, travel restrictions, social isolations, and sometimes even a dependency for a caregiver. They are also not a guarantee of survival. In fact, studies suggest that the use of feeding tubes in some patients can actually increase their risk of mortality.
Patients with feeding tubes face difficulties finding appropriate care, adequate support, but need to be monitored very closely by healthcare providers to ensure that not only are their nutritional needs being met, but they're not experiencing any issues like infection. In fact, my entire tube education was watching what a couple of the nurses did while I was inpatient, and a couple of handouts they included in my discharge instructions. That was it. In subsequent hospitalizations, I actually had to provide all my own feeding tube supplies and teach the staff how to work with my tube. Twice hospital staff has actually broken my tube because they didn't know how to use it correctly, and that ended up requiring me to have additional tube exchange procedures.
Most people have only seen or experienced feeding tubes through television or movies. There's no real effective way to explain it and you can't get it, unless you get it, and we don't want you to get it.
If there is someone in your life dealing with this, it is important to recognize and talk with them about their situation, what accommodations they may need, and how you can support them in this hard season. However, the best thing you can do is to educate yourself and others about their condition and the ways that this challenging process can benefit them and their family.
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