So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site. To recap, had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow. In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia. In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010. By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site. It was also ruining my shirts and blouses with stains and emitting an offensive odor. My GI doctor and I decided it was time for the tube to come out and let the hole close up.
As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed. Well, mine didn't closeup, much to my chagrin. My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed. Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.
I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge]. We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer. Then we entered the Endoscopy Suite inner sanctum at about 12:15. The nurses were all cheerful and pleasant. Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in. My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team. They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar. They would go with a lighter anesthesia and shoot albuterol into my throat to numb it. I would be awake during the procedure but probably not remember much.
Well, I remember everything. It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern. Good job!!" I'm not clear what the "job" was, except not passing out and not screaming. All I know is, I was relieved when I heard them all tell me we were done.
The aftermath was a sore site which bled a little and a very sore throat for about three days. Oh, and I lost my voice for about the three days that my throat hurt. All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now. It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles. I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content. Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.
It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined. And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Sunday, July 10, 2016
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