feeding tube/bag decision

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Lynda

Active member
Joined
Jun 4, 2015
Messages
45
Reason
CALS
Diagnosis
03/2015
Country
US
State
CT
City
Naugatuck
This is not a decision my husband has to make right now. He can still eat and drink, although some days are more laborious than others for him. I prepare softer foods and high calorie smoothies for him to make it easier and that's working for now. He's actually up 12 pounds in the last 2 months.

We have had our medical directives in place for some time, long before the diagnosis. One of the items we checked off as not wanting was feeding tubes. I did tell my husband that, given his diagnosis, he might want to revise that. He also might choose to keep it as is. I told him it's his decision and I'll respect whatever choice he makes.

It left me wondering if any of you (as either patients or caregivers) had made the decision to not allow for feeding tubes or bags of any kind. I'm just trying to wrap my head around the possibilities before we have to deal with it.

Thanks for sharing your experience with me! It's very much appreciated.

Lynda
 
This has been discussed previously, you could find those strings using search.

I recently opted for a PEG (feeding tube into stomach). I can still eat but crumbly stuff tends to leak into my lungs.

IMHO the feeding tube should not be considered "life extending" but as "life enhancing".

The feeding tube makes nutrition, hydration and the taking of medicine easier. As I have stated elsewhere, ALS may well kill us PALS but that death shouldn't come from starvation, dehydration, lack of medicine or aspiration pneumonia.
 
Thank you Greg. I appreciate it. I did look for threads, but I guess I didn't search hard enough.
 
I am a big advocate of feeding tubes. My mom chose not to have one. As her swallowing deteriorated it became harder and harder to get anything into her. I have very bad memories that still haunt me of her choking more and more as she took in less and less. My sister was going down the same road and was dangerously underweight when she finally had her tube. Without it I am sure she would have been dead in a few months. She is still here over a year later.
I do not have a feeding tube but plan on one the first time the doctor says it is time. I think it is a comfort measure for both PALS and CALS. The family does not have to live with choking memories and if the PALS needs to be fed it is quicker and easier with a feeding tube. My opinion based on experience.
 
Thank you. Given what my research is showing, I think I would advise Michael to revise his directives to allow for an ALS feeding tube.
 
You are doing good on the nutrition if your husband is up 12 pounds.

Once you get a feeding tube you don't have to use it other than daily flushing, which is no big deal.

But its best to get it placed while an operation using general anesthesia is not a problem, before breathing becomes an issue.
 
Lynda, I hesitate to share our story but..... My hubby was advised to get a feeding tube after he was diagnosed and said no. After 2 years, he was down to 119 lbs., and swallowing was a major issue. After a serious aspiration episode resulting in pneumonia, he decided to get the tube. But he was so weak by then, he died the night it was put in. I try not to second guess the "what if he had done it earlier". As the others have said, the decision is ALWAYS the PALS but- would encourage him to think seriously about it before he really needs it. Aspirating is a true bummer!
 
I am so glad I got my feeding tube. It is definitely a life enhancer. And I got it while I could still eat and drink. We started with using it for meds because pills were becoming a problem. Now 99% of my meals go in the tube.
 
I will suggest if he is going to get the feeding tube, or not too sure, meet with the surgeon to get all the information you might need.
Don't wait too long like I did, they were concerned about my O2 levels, so no sedation.
Ya, it hurt!

5 weeks later and I couldn't be happier.
weight, energy, stamina, and appetite all up.Good luck
 
I printed out a bunch of information about it, how it works, the procedure to have it placed, etc. We'll talk about it this weekend. Thanks SO much to all of you for sharing your thoughts and experience. It has been a real Godsend to have found this forum.

cheerleader, I'm very sorry for your loss. Please know I'm sending you a gentle hug tonight.
 
Lynda, I just put a few pictures of my feeding tube "Seymour" in pictures & albums.
Go to COMMUNITY above, click on pictures & albums
Kat
 
Kat,
How is the pump used? I thought you just put food through the tube, but it goes through a device first? Thank you for the pictures, my husband needs to get a peg put in, but is very reluctant. I have been talking with him, but he's not receptive, so I'm going to gather up all the materials and try to convince him to go forward with the peg. Cheerleader, your poignant story touched my heart, thank you for sharing, blessings to you.
Thank you Linda for opening up the discussion, and Kat for sharing your pictures.
Grace
 
I would advise him to get the tube sooner rather than later. This comes from someone who had a great deal of trouble with the tube, I got an infection and was in the hospital for 5 days, they were afraid of my breathing, so I had to suffer through it and the next few weeks without pain meds, now I know what getting an operation in the Civil War was like,,, it really hurts. But I have gained 19 pounds, not that you can tell from my dying muscles.
If he doesn't get it, he will likely get aspiration pneumonia or starve. At the end it was taking me 2 hours to eat what I used to do in 15 minutes.
 
Seymour's a real cutie...... or, at least, as cute as a feeding tube can be. Thanks very much for sharing. These are exactly the true to life photos that help someone like me. :)
 
I do not think I will be getting one (or the DPS) but I am going to meet with the surgeon in a couple of weeks about it and DPS and will hear them out.
 
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