Did anyone struggle deciding on a feeding tube?

GreenCat

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There's pragmatic decision-making: "Have I lost more than 5% of my body weight?" Check! "Am I choking in spectacular fashion nearly every day?" Yes, indeed. If Yes, then it's time.
But beyond pragmatic, the words "feeding tube" are revolting and it feels like giving in one hole at a time. But I have to come to terms with it. Could anyone talk to me about their worries and how to come to terms.
 

Nikki J

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Hi I think it is super common and I know so many people who put it off because of those feelings.

I am not there yet and I have promised myself not to delay when told it is time. I am FALS. My sister delayed and delayed. She lost a lot of weight and weakened faster than she should have. Meals were exhausting and a nightmare for both sides. She finally got it and had a lot of trouble tolerating refeeding. Her recovery was tough too. We could have avoided a lot of suffering if she had agreed earlier. She frankly admitted she wished she had done it sooner. The thing that convinced her was she was dangerously emaciated and losing weight in spite of every effort to maintain. Don’t let it get to that point. Please. For you and for your loved ones. Watching a PALS choke and struggle to swallow is pure torture
 

swalker

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My current progression is slow, so I have had a lot of time to think about this topic.

I was told early on that I should get a feeding tube. I was given a specific weight at which I should stop procrastinating and act! I have managed to keep my weight above that magical number.

But, it has been an easy decision for me to decide that I will get a feeding tube when the time comes. Here are some factors I considered.

1. I have a god daughter who has had a feeding tube for 10 years. It is amazingly easy to manage and does not interfere with her life. That first-hand experience has shown me that a feeding tube is not something to be feared.
2. A feeding tube can be removed if I change my mind. The decision to get one does not have to be a final decision.
3. Once the feeding tube is placed, I still don't have to use it. It is my decision on when to use it and how much sustenance to take through it.
3. I want to have the feeding tube so that I can take "oral" medications and so that I can stay hydrated, even if I decide to deny nutrition via the feeding tube. I have read too many stories of folks that did not get a feeding tube with the consequence that their last weeks were miserable. Without a feeding tube, they were unable to take medication and unable to stay hydrated.

For me, getting a feeding tube via interventional radiology is an easy decision. I have decided to do so when the time comes. The time has not yet come for me. I have swallowing difficulties, but mine can be managed by being careful about the foods/liquids I consume and how I swallow. It sounds like your swallowing is worse than mine.

Steve
 

Jimi

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I had a feeding tube and trach done at the same time, mid September '21. I put both off for as long as I could. I was on NIV 24/7 since October '18. For the six months prior to surgery I was down to about 600 calories per day. Being paralyzed from the shoulders down doesn't require a lot of calories but 600 isn't enough. I was getting too thin and mildly malnutritioned. I never had to go to the hospital before but there were some uncomfortable times with inhaling food. Thank goodness for the cough assist! To get enough water in, I had to use a backpack type water bladder with a bite valve hung at the proper height to allow gravity to feed the water as I didn't have the tongue strength to drink any other way.
The feeding tube is really no big deal. The bummer part is not eating and enjoying food anymore. I tried many different types of formulas and interestingly I seem to do best with the cheap stuff, ISOsource. It's corn syrup and canola oil and other stuff. It provides complete nutrition. This just happens to be what my insurance provides to. I feed via a syringe twice a day. I have a little water with each feeding and a big serving of water between meals. In the water I had some extra vitamin d and probiotics. Feeding takes 15-20 minutes. I'm gaining weight slowly back to a comfortable place. Currently my intake is 1425 calories and 1.2 liters of water.
Once the tube heals and you get past the not eating part, it's not a problem.
I must admit, I no longer enjoy watching cooking shows.
 

Nikki J

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Just to be clear a feeding tube alone does not make one unable to eat. One argument for early is you can eat for fun and use the tube for calories fluids and meds if needed. On the other hand disease progression will continue so it is true most PALS with feeding tubes come to rely on them for everything but at that point without a feeding tube there would still be no eating
 

GreenCat

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Thank you, everybody. Sooner, better than later, liters of luscious water and not dismaying my care-giver. I can give up cooking shows. Thanks again. Very very helpful.
 

rnewton60

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I have Bulbar onset ALS since 11/01/19. It was suggested to me by my physican to get a Peg Feeding Tube done early. I was resistant to the idea for the all the reasons you listed. But I went online and did a little research and what I read I found compelling. So I agreed to get the feeding tube early. Turned out to be one of the best decisions I ever made. I still ate the vast majority of my food orally. But I did take a little bit in via the tube. It got me used to the idea. Then went a slowly started to struggle with certain foods I used it more. Then I could only eat soft foods. Even more. Then I could only drink liquids. Even more. Then one day I was 100% on the tube and it was seamless. The only side note I would make is I was told the surgery was minor. Well I guess that depends on what you consider minor. I found the recovery to be quite painful for four days. But then it leveled out and was okay. I highly recommend anyone with ALS consider getting the tube early. The survival rate for early adopters is much higher than those that wait until they have to.
 
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