Feeding tube tomorrow

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Duker52

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Well, the day is fast approaching -- tomorrow I get my feeding tube. I have Bulbar Onset, but can still swallow. My spouse, neurologist, and friends have all said to get it before you need it. So I am bowing to their advice and getting it out of the way. Would appreciate any words of wisdom or do's and don't's so I can avoid any big mistakes. Bill
 

KimT

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Bill, I don't have any advice but I will pray that the procedure is a success and you will be back home with no complications.
 

BlueandGold

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Bill,

DO NOT let them give you general anesthesia. If you don't already have frequent spasms and cramps in your abdomen. The procedure should take no more than 15 minutes.

Best of luck,

Vince
 

Big Rob

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Hi Bill,

Good Luck tomorrow. Hope everything turns out fine. Listen to your loved ones because that is the best advise anyone can give you. My 2 brothers both passed away from ALS 10 months ago, one in Oct. 2015 and another is May 2016 and they both refused the tube. It was their wish and we granted it. Let me know how it turned out.

Love you brother,

BigRob
 

jayswife

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Hi,
My husband got his feeding tube a month ago. He can still eat by mouth but has a had time moving the food around in his mouth and his appetite has diminished. He did have some pain initially after the procedure but by the next day when we went home he was ok. We both feel it was a great decision. He feels like he has more energy and I feel good that he's getting more nourishment. Good luck!
Amy
 

Lixen

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Good luck to you. I think you've made a wise choice. Wishing you a speedy and uneventful recovery.
 

Ells

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Wise decision Bill.

Take it easy post procedure. The pain is usually managed by OTC meds; do take them so you're not tensing your tummy muscles too much. Coughing, laughing & sneezing may hurt a bit.

Follow the after-care instructions to the letter.
 

Duker52

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Well, the surgery was a success and I came home the same day. Lots of pain, especially when I cough. Not fun. Now another question: where do you get your feeding tube supplies, e.g., online, drug store, and with/ without prescription? I'm new to this, so I hope it's not a silly question. Bill
 

affected

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I'm amazed your hospital or clinic didn't have you ready with supplies and all you need to know beforehand.
 

GregK

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Someone who is not VA will jump in, but I believe your doctor writes a referral and a supply company sends the stuff..
 

KimT

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Please try to get Liquid Hope. More and more PALS are getting approved. It is organic and not filled with corn syrup and other garbage. It's worth fighting for.
 

gooseberry

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Usually a "feeding company" will see you before discharge and give you supplies. You need to be flushing the port/tube daily. If you do not have any supplies for flushing, call your doctor so he can call in scripts for wound care and flushing(adapters and syringes or just syringes)
 
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