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Beach Bum

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Oct 5, 2010
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142
Diagnosis
08/2010
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US
State
SC
City
Conway
Hello Everyone,
My Dr wants me get a feeding tube Now,the reason is I am still healthy.Will it be a pain in the butt to deal with.I am able to eat meals,took my daughter out to Applebees for lunch today had a great meal,no choking,or would it be wise to hold off until things start going down?

Beach Bum

Hugs to all Ken
 
Do it early as it is much easier and recovery time is also much less. I have always been an advocate of doing things before they become an emergency. You will not be sorry and it will be there for when you need it.
 
My husband got his last Dec. FVC was 64 so we went ahead and did it. We only flush with water and plum juice for now. He has the long tube and just ties a boot shoelace lump and hangs it like a name badge. Not something you would like to walk around with no shirt but he is in a PWC and it doesn't show that much.
 
Get it now. My husband had his installed a yr ago, and we use it only when he doesnt have time for a meal. Although I am sure that not a single PALS will tell you they like it, very few regret getting one. Also, staying hydrated is so very important, and the daily flushings assure that you get the extra liquids your body needs.
 
does it have a long tube, can you unscrew the tube and go to the beach and swim,
 
How long to recover?how long is the surgery?
 
They always start with the long tube I believe. Surgery is about 10 minutes. You won't even know it happened. They will keep you 24 hours, and it feels like you did some crunches, and have some sore tummy muscles. Thats it! It is no problem at all. You can get a flush mount type a few weeks later I think. I just kept the long one. It doesn't bother me at all.
 
It took 5 minutes for me and there was no pain at all. They like to keep you in over night and the long tube is the first one you have to get, 6 weeks later you can change it out for a Mic-Key or something else. I kept my original for almost 2 years.
 
really, when is a feeding tube needed?
 
As soon as you are DX with ALS you should consider getting a feeding tube. Eventually it will be needed by most PALS to keep there weight on. Doing it sooner rather than later is preferred because once your breathing is compromised, it is more difficult to undergo the short procedure to install it.
 
Thanks sadiemae, it makes sense. Does anyone have other opinion?
 
I agree with everone else, I had mine put in in Feb of 2009 and haven't regretted it one bit. Do it as soon as you can even if you only use it for water for a long time, it is really easy to lose weight and hard to gain back.
 
Thanks Barry. So one does not have to wait till one is unable to swallow. I can swallow fine, just no appetite to eat and is losing weight.
 
Peter, the great thing about the PEG, is you get the healthy stuff in your tube, and only eat your favorites by mouth. If all that is appealing to you is strawberrry shortcake, eat all you want! The worry of getting a nutritious well balanced diet is gone.
 
Thanks Barry. So one does not have to wait till one is unable to swallow. I can swallow fine, just no appetite to eat and is losing weight.

Sounds like a feeding tube would benefit you greatly. If you can't be bothered to eat you could use the feeding tube to get the necessary nutrition.
 
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