I haven't updated in a while because I've been wasting too much time on Facebook and Twitter [fec139, if you'd like to follow me].
A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].
It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.
So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!
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.
Tuesday, July 21, 2009
PEG Feeding Tube Replacement, etc.
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Please ask your surgeon and anesthesiologist to allow you to use your biPap machine - I'm assuming you have one. My husband's FVC was low when he had his PEG installed and his attending RT/Nurse made this suggestion. I understand it's a little more work for the surgery team, but it can be done.
Holding good thoughts for you in CA.
Thanks for popping by my blog and saying hi. My husband has had ALS for 10 year's now and has been on a vent for 6. In the comment above demand that they use a bi pap after your surgery. My husband had his feeding tube put in 2003 and right after surgery he had respirtory failure because of the CO 2 build up. He was to weak to push out the bad air. Seven days later he ended up with a trach and vent. He Is doing wonderful and we have no regrets at all. I will keep you In my prayers and pop Into your blog from time to time. Take care..Kathi
My very best wishes go out to you, so you can get out to that game!!
I'll be thinking of you
(Mary Jo in Canada)
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