Ok, first of all I am fine, and then some. But now I have even more reason to be infuriated at North Shore Forest Hell!!! And the Executive Director Robert Hettenbach, with whom I have already been in touch, will hear from me again.
Preparing for the event of a possible total tube-change, I arrived at Beth Israel’s Endoscopy unit with Ellita schlepping my bi-pap, in the event that I would have to “go under”, an event which frightened me to no end. It is risky for anyone to go under anesthesia; anesthesiologists are among the specialists who pay the ighest malpractice insurance premiums. And for a person with a FVC (forced vital capacity) of about 18%, it is especially risky.
And I had been instructed not to eat after breakfast. So it was 2:00pm and I hadn’t had anything since my Carnation Instant Breakfast at 8:30am. So I was very hungry.
Jody Wiesel, my friend and ALSA volunteer was there to meet me, along with Teresa Imperato, nurse extraordinaire from the ALS Clinic. I told them how much it meant for me to see them there. Jody said “You’re too important to us, for us not to be here”.
So Teresa tells me not to register but instead to lift my shirt and let her see the tube. I tell her it was leaking at the end, she brings me to Frank, the Physician’s Assistant, and asks if he has a cap for my tube. He has hundreds. In iteraaly less than three minutes, he tells me there is nothing wrong with the tube, snips off the end, puts on a new cap, and I am done! So the upshot is that Teresa has access to Frank’s supply of PEG caps, which she knows how to put on. Therefore, if it happens again, I only need to go to the ALS clinic, and Teresa will fix it for me. Ditto to anybody who reads this with a PEG tube; you only need to call the clinic; if it is a cap replacement, Teresa can do it. This makes me want to go to North Shore Forest Hills and scream.
So now we had 3 and-a-half hours until our access-a-ride pickup. We had lunch – I was starving—and then Ellita had her toenails done, while Jody and I explored the neighborhood around Stuyvesant Town/Peter Cooper Village, which has gone really upscale.
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.
Friday, July 13, 2007
Posted by Fern Ellen Cohen at 10:53 PM
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