Old 02-08-2018, 08:43 PM #1 (permalink)
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Default Should I get feeding tube now?

My ALS doctor and others with ALS recommend getting feeding tube while I am still healthy. I was orignaly against it, but am now considering.

I have now problem eating now (I weigh 285) and still have 85% lung capacity.

What is your opinion? They said it doesn't have to be used until necessary....
Thanks for your opinions
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Old 02-08-2018, 10:48 PM #2 (permalink)
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Default Re: Should I get feeding tube now?

Absolutely.

I didn't use mine for months and now couldn't live without it.
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Old 02-09-2018, 04:06 AM #3 (permalink)
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Default Re: Should I get feeding tube now?

Definitely!

It makes all the difference to be proactive - heal well now while you are still on top of things, prevent losing weight and becoming dehydrated, and stay ahead of whatever you can!

My Chris was so emaciated and dehydrated when he finally said yeah ok now is good that he never received any real benefit.

Go for it!
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Old 02-09-2018, 06:49 AM #4 (permalink)
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Default Re: Should I get feeding tube now?

Agree with above. My sister delayed until both her breathing and swallowing were compromised. She wished she had listened to the neurologist and got it when recommended. It is easier when you are in good condition.

I have promised myself to schedule one the first time my doctor recommends it
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Old 02-09-2018, 07:51 AM #5 (permalink)
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Default Re: Should I get feeding tube now?

Definitely. We did DH’s when we did the trach even though he didn’t need it at that point. Best decision ever.

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Old 02-09-2018, 08:02 AM #6 (permalink)
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Default Re: Should I get feeding tube now?

I agree with others- absolutely go for it! I got mine pretty early. I still eat most foods by mouth but I can't drink water/thin liquids, and I hate the thickeners. I also can't swallow pills. So I use mine for meds and hydration, and to supplement nutrition when I need to. It makes my life easier and I'm also happy that I was able to adjust to it while more abled. There is a learning curve and it's nice to have time to figure it out when there is not the pressure of being in dire need of the tube.
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Old 02-09-2018, 08:10 AM #7 (permalink)
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Default Re: Should I get feeding tube now?

Oh yes getting things in place before you actually need them is wise.

I have my feed tube in about a year and still only flush it as I can eat purred food and still swallow most liquids.
Good luck
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Old 02-09-2018, 11:14 AM #8 (permalink)
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Default Re: Should I get feeding tube now?

Thanks to all for the advice.... I guess i am being silly... In living will, I did not want feeding tube or Trach. Time changes opinion, I guess!
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Old 02-09-2018, 01:01 PM #9 (permalink)
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Default Re: Should I get feeding tube now?

No, no, no. Taste is a part of quality of life. I cant swallow correctly bec of als and what i would do for a turkey dinner
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Old 02-09-2018, 01:12 PM #10 (permalink)
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Default Re: Should I get feeding tube now?

The feeding tube does not change your ability to taste and swallow. You can eat anything with a feeding tube that you can eat without it. You can eat for “ fun” with a tube. I am sorry you have swallowing issues Goldie
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Old 02-09-2018, 01:44 PM #11 (permalink)
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Default Re: Should I get feeding tube now?

Yes , my husband didn't want to , but he was choking on water and his meds too.His was placed in November.He still eats soft foods.The day after his tube was placed he said it was the first time in weeks he wasn't thirsty.His takes all his water , meds and supplements too.He is still very active .He has his peg changed out for a mic-key and loves it.Best of luck to you.
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Old 02-10-2018, 09:27 AM #12 (permalink)
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Default Re: Should I get feeding tube now?

Goldie, the feeding tube does not mean you can no longer taste or eat. What I love about my feeding tube is I can put "boring" but necessary nutrition through it, and meanwhile eat by mouth the things I truly enjoy. As opposed to spending so much energy painstakingly trying to eat for nutrition, this way I save my energy to use on foods I enjoy, and the rest can go through the tube with no energy expenditure.
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Old 02-10-2018, 12:05 PM #13 (permalink)
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Default Re: Should I get feeding tube now?

I think it's an important point that you can get lots of fluids in through the tube as so many PALS slowly begin to dehydrate as drinking becomes more and more difficult. Being dehydrated then impacts on how you feel mentally, bowels, breathing, skin health, circulation - it goes on and on
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Old 02-10-2018, 12:21 PM #14 (permalink)
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Default Re: Should I get feeding tube now?

Tillie is so right. I was chronically dehydrated before I got my tube because liquids was so hard to swallow. I had constipation and I thought it was from muscle weakness and/or inactivity. But after I got my tube and started hydrating properly thru the tube my constipation went away and I no longer needed senna, which i was taking daily before my tube.
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Old 02-10-2018, 01:27 PM #15 (permalink)
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Default Re: Should I get feeding tube now?

I appreciate all the advice... it is disturbing to realize the slippery slope decline I am doomed to! 6 months ago, I was climbing steps of Angkor Wat unassisted and now......
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