I am having a really tough time. None of this is anybody’s problem but mine, but it is so tough to handle these things when you can’t speak, and when you can’t get anywhere without calling access-a-ride with a day’s lead time.
First, my Mercury talking machine is still broken, and I am getting no response from the rep. Then on Friday, after my afternoon tube feeding, I closed the cap as I usually do, only to have everything spewing back out on me, all over the floor and my clothes – my whole lunch, some breakfast, and overall stinky stomach crap. I called my GI doctor who said I could meet him at the ER and he would change the tube. Problem: he is in Manhattan, and so are his hospitals. The only way I can get to Manhattan is by Access-a-Ride, and I need to call them a day before.
So he told me to go to a local ER and they would have to get a GI Dr, ti change my tube. So Ellita and I went to North Shore/LIJ in Forest Hills at about 1:30pm. We got an ER bed right away and within a half-hour I was seen by the attending physician, who said he would change the tube. Then, he forgot about us. At about four o’clock, a nurse came in and Ellita told her we were still waiting for the doctor. The doctor came back, and said he was supposed to go home at 4, but he “would see if they had a PEG tube”. He came back with some orange catheter, which was much thinner in diameter and said “we don’t have what you need, so this will have to do”. So then he proceeded to deflate the balloon that holds the tube in my belly and pull on the tube, saying “I can’t get this tube out”. He saw he was hurting me, so he stopped and put a clamp on it the size of a cuticle scissor and walked away. I said “I can’t walk away like this” and he said “then tie it up with a rubber band.” I asked him to call a GI doctor and he refused, saying that a GI doctor won’t come to the ER. Ellita and I walked out and came home, It was now 5:00pm, and we put a rubber band around the tube. That is how it will have to stay until I can get in to see Dr. Cohen in Manhattan. I have to call him Monday to see when I can get an appointment, and then go in on Access-a-Ride.
It is now Saturday morning and I have been up since 4:00am. My hospital bed went haywire, and the head keeps going up and down by itself. I think Medicare may have purchased it, so I probably have to pay to repair it, I doubt if they can come until next week, so I will either have to sleep in my recliner or my wheelchair until then.
These are my problems, and I have to deal with them. But it is so difficult with this disease to deal with anything.
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.
Saturday, July 7, 2007
feeding tube and bed woes
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