As I begin to use this appendage that Dr’s were so keen to get me into 6 months ago, it’s becoming crystal clear that they paid absolutely no attention to what I wanted to use it for and have never had to use one themselves. After all the pain, interruption and infection it took to get this piece of peg into me the damn thing is unweildy and borderline useless. It was to support my nutrition…but it is too small to carry even my vitamins ground to powder and mixed with 5 parts water with out clogging up and making a big fat mess much less handle the vitamin and fiber rich shakes I make for myself.
I use an old fashioned ratting comb( a dupont Black Diamond number 40 comb) with a 5 in metal pick on the end to punch through the clogs allowing the mixture to spit up on whatever I have wrapped around me at the time, so I can continue to inject the vitamins/water mix into the tube through a 60 ml syringe tilted at an angle to avoid the clogging of the supplement sediment. This is the half hour process I go through to take my vitamins and supplements as I can no longer swallow them and many do not come in liquid form. It is such an exhausting process that even though I’m supposed to take the supplements 3-4 times a day I end up doing it once before I get dressed. My favorite part is how the cap on the tube regularly comes undone so that it drains the content of my stomach down the right side of what I am wearing~ it’s disgusting and apparently my bile smells like mangos. BLECH.
The whole thing is absolutely unmanageable and vexing. I’m so dissappointed and feel misled and unheard all over again, as I remember repeatedly asking about the uses of the tube and how it could work for me. I’m clear I need a larger tube and hopefully a shorter tube~ the one I have hangs 12 inches out from my stomach. What shocks and amazes me is the lack of customer service demonstrated by my former hospital, there was no interest over there in my experience as the end user of the peg tube…there was alot of pushing me to get the procedure done asap…before I was ready. However there was no asking me questions to make sure I was getting the right tube for my needs, infact they didn’t ask any questions at all while they didnt listen to what I did say my needs were.
The distinctions called CUSTOMER SERVICE and PATIENT CARE were wholely missing from my procedure at Northwestern from the procedure~ which I’ve relayed in this blog…to the lack of listening to my requests and needs as their patient. It was simply not a concern for them. I call bullshit Northwestern! Your public relations campaigns are lying about your focus. I am not alone in this conclusion. 6 months later after having healed from the infection and the harrowing experience around my procedure I am again left feeling bilked and taken for a ride by those who promised to care for me. I am not someone who is interested in being wounded…It’s annoying to me! I have enough to do with out being reminded by an open wound in my stomach that isnt working for me…it’s time it began serving me for crying out loud. Let’s hope my new team at UIC’s MDA clinic can provide some answers and keenly listening ears… that would be a nice change. Perhaps they can make some sense of it, I’d be happy with a bit more workability.