Doctors suggested my dad to get a PEG

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Emanol

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Hello everyone,

After some years with UMN dominant ALS, doctors finally suggested my dad to get a PEG. Apparently, they found out he is no longer swallowing properly and there are food remains.

He took it quite badly, since he really loves eating. He has not lost any weight since he began with ALS symptoms back in 2017 and his breathing remains unaffected.

My question is: do you think there is any room with doctors to delay the procedure? Or do you recommend he do is instructed? It's just hard for him, I think. Eating is one of the things that motivates him during the day, and I worry about losing that. Also, since there is no weight loss, I imagine it might be possible to wait, but wanted to defer to the people in the forum to hear their experiences...

Thank you so much for your help, time, and energies.
 

GXTrex

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My dad got aspiration pneumonia due to eating by mouth when he shouldn't have been which was pretty serious. I recommend he gets it now, even if he does not want to use it right away. He can still eat by mouth while he has the feeding tube.

Maybe he can eat by mouth only foods he really enjoys and use the feeding tube for the rest of his nutrition?
 

Nikki J

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Having a tube does not mean he can’t eat. whether he can swallow safely is what drives that. my sister delayed after having a tube recommended and regretted it.

as Glenn says aspiration pneumonia is a serious risk and needs to be taken seriously. Getting most of his nutrition meds and fluids through the tube and carefully having easy to swallow treats may be the way to go for now
 

Clearwater AL

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I wrote previously about my bout with Aspiration Pneumonia.
I spent five days in the hospital. With the onset over four days
prior I coughed so much and so hard my chest and stomach got
so painful I could not sit up… had to be taken to the hospital by
ambulance. Food particles got into my lungs during a choking
spell while I was eating.

I was slow progression. It now has accelerated. Something I
thought was further down the road… is now here. My Helio C2
wheel chair has been delivered and set up to my fitting. The chair
lift for our stairs will be installed next week. My breathing is
more labored now. The Peg is coming.

Yes, Aspiration Pneumonia is very serious but can be avoided.
 

Greerguy

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My wife is average progression. She can still eat but went ahead with the peg tube.
We are only using the peg tube to take pills. It makes it so easy. Once the breathing score goes down too much you would have to go to somewhere like the Mayo clinic to have it. It's just a inconvenience. He could still eat some foods I bet.
 

Emanol

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Thank you everyone!

We have decided to go ahead with the procedure. It will be helpful and he will still be able to eat the things he likes most (pureed fruit, etc).

Thankfully his breathing score has stayed the same since 2017. We are very grateful that his ALS, which is heavily UMN dominant, seems to not have affected his breathing yet. With some luck, the PEG tube will be the only serious intervention in sight...

Thank you everyone for your helpful comments!
 

SlithyToves

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I have a leg tube. For awhile I still ate by mouth but pills wear thru tube. No am totally on tube. It was nicer getting it early on, because, I could inch my on tube.
 

howdoug

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I am interested to here that your father has mostly UMN ALS. I was diagnosed January 8, 2001 with ALS. After couple years I tried exercise in a warm pool against the recommendations. Since then I was told that I had UMN ALS and exercise what muscles I have left is very important. At 2 years I was pretty well a quadriplegic and haven't progressed much since then . I go to pool 3x/wk. Doctors recommended a feeding tub back in 2004. Haven't gotten one yet although they recommended u=it again . My swallowing is getting worse and maybe I 'd better get one pretty soon .
 

affected

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@howdoug I'd be really interested to know who was telling you not to do exercise in a warm pool? was that your ALS clinic?
 

howdoug

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It was the ALS Society. They worried that I would progress the symptoms .
 

Nikki J

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Of course 20 years ago the recommendations were for range of motion only.
 

affected

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ah thanks for reminding that it was so long ago Nikki as I was thinking that surely warm water exercising would be recommended.
glad you went with what you felt was working for you howdoug!
 

jethro

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my doc suggested me to get a peg last year, saying "this is a moment". i refused. my swalloving improved. it's up to him.
 
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