In my last blog post, I told you how the insensitive approach of my doctors initially led to me completely blocking the topic of PEG feeding tubes. Especially because my cautious interest was not taken seriously. This didn’t make it any easier for the staff at the next clinic to convince me to have a PEG tube. Because, even though many people in this situation would certainly wish for it, just because I didn’t want a PEG didn’t mean that I didn’t need it.
That quickly became clear
The entire team at the rehabilitation clinic quickly realized this. The nurses saw how and above all how much I ate and the speech therapist also noticed very quickly that something was wrong. I was then approached by the ward doctor. Instead of simply telling me that I would need a feeding tube, she gently broached the subject. She immediately realized how little I thought of it. She didn’t push me, but simply told me that, in her medical experience, a PEG would be good for me.
Back door
She also kept a back door open for me. She suggested that we could do a swallowing diagnosis first. Maybe it would turn out that I didn’t need a feeding tube at all. She knew that was nonsense, of course. But it reassured me for the time being. After all, it wasn’t yet certain that I would really get a feeding tube. In a good mood, I set off with my speech therapist for the swallowing diagnostics. (The details of this procedure in another post. That’s going too far today). Contrary to my naive conviction, it turned out that it was high time I was fitted with a PEG. Continuing to live as an oral taster would be dangerous for me due to the frequent aspiration.
Understanding
That was the end of the world for me. Now there were no more excuses. I had seen for myself that swallowing didn’t work properly. So I would not be able to avoid a PEG. However, instead of celebrating this supposed “triumph” – true to the motto “we said it straight away” – everyone showed understanding. Starting with the speech therapist, through the nursing team to the ward doctor. They first gave me some space and even let me leave the clinic on my own, although they were worried (more on this in another post). A short time later, they had already organized an appointment with the in-house psychologist so that I could talk to her about my fears (there is already a detailed blog post about this).
Exchange of experience
Even though it was now clear to all of us that I would not be able to avoid a PEG – at least if I wanted to tackle all the goals I had for my life as a young person – I was not rushed. They just let me know that an appointment could be arranged soon. They also answered any questions I had about the process calmly and in detail. I was also introduced to another patient at the clinic who also had a PEG tube. That was basically this blog for me at the time. He also told me that a feeding tube did not automatically mean that you only eat through the tube. (I’ve already written a blog post about this.) In fact, during the course of my rehab, we even swapped the toppings on our evening meals several times because he always had something that I really wanted to eat. A pretty good deal for him. I remember once swapping my entire dinner for just one slice of corned beef.
Make the decision myself
This time, after seeing for myself why a PEG was objectively necessary, having my questions answered seriously and having someone to talk to, I was soon able to make the decision for myself that it was time for a life with PEG.
