Looking for feedback from PALS with feeding tubes

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Nikki J

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Hi
I am specifically looking for replies from PALS here if anyone can respond

When you got your feeding tube were you glad you did? Did it make you feel better? I have heard that some report a relief and feeling less tired because less effort expended? Is this your experience?

Anyone regret it? Anyone wish they had done it sooner?

The question is not if for us the question is when. The doctors have been saying it is time but....

Thanks for any feedback
Best
Nikki
 
My husband got his 2 months after he was D X. We never used it for the first 18 months. He can still eat by mouth, but without the tube he would be severely dehydrated. We use formula to boost calories. He has never liked the tube, but has never regretted getting it. As a caregiver, it is so nice to have the reassurance that he is getting ample nutrition and hydration. I have to do the feedings for him, as his hands do not work. I also feed him like you would a baby when he eats by mouth. The key to his eating by mouth is to feed him stuff he really likes. No sense in eating for nutrition when you have formula that will do that. It takes less than 10 minutes to give him a can of formula and 20 Oz of water. It takes close to an hour to prepare and feed him his dinner. Since he got his tube so soon after his D X, and we didn't use it at first, I can't answer about feeling better, but I do know he feels better when he gets 5 formula and water feedings a day as opposed to 2 tube feedings a day.
 
Hi Lori
Thanks for chiming in! I know it is easier on the caregivers and I plan on getting one early myself but this is not for me. And she is resisting even though each meal takes a hour and is punctuated with choking etc. so far maintaining weight but I believe it would be better all round. Sigh....
 
The nicest thing about it is being able to enjoy the food you like if you can still eat by mouth. It takes a lot of energy and time to eat 325 calories. It takes 5 minutes with a tube. Eating by mouth is worth the effort if is a hot fudge sundae. Not so much carrots and peas. Also, if they do not get enough fluids they can develop kidney stones which is very painful. Why are their reasons for delaying getting the PEG?
 
I think it is a denial thing. I am frustrated. It is not my choice I know but if you intend to get a tube and it can help now why wait? Cognitively intact just stubborn I think!
 
I waited till the last minute before making up my mind about the peg tube. I was struggling with weight loss and my breathing was weakening. Eating was stressful and unpleasant. As soon as my peg tube was put in, I felt relief. I became excited around meal times again. Now, I participate around the table with my family. Nobody worries about the gagging or the choking. We blend different recipes. I feel stronger and healthier. I'm happy being a tubie :)
 
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Thanks Cricket. I think that is what will happen here. I just wish we could do it now and spare her and everyone else ( especially my niece who is only a child) the anxiety of every meal. I am so glad it worked out for you.
 
I would have had it done sooner but i was more afraid of the procedure and therefore tried to hold off as much as i could hoping i wouldn't need it. Good luck
 
I got my feeding tube about 3 months after my diagnosis. It was placed as a precaution since my breathing was somewhat compromised too.

At first I was like, no way...but now that I have it I am so happy I had it done when I did,

I take all my meds and some feeding, formula, through the tube. It makes life a lot easier and I have maintained my weight throughout.

I have yet to experiment with my own blends But soon I will be dong that too.

Joel
 
I had a DPS put in and the doctors wanted to put in the feeding tube at the same time it's easier on the patient that way. I use the tube for meds right now and it makes it al lot easier. Did I want the peg? No. Did I want a DPS? NO. but I do know what ALS will do to me. And if I can just one step ahead of it I will.

Patrick
 
Thank you all for sharing. I so appreciate the time and effort.
Wishing you all the best
Nikki
 
My dad recently got a feeding tube. Feedings are going well. He was diagnosed with ALS one month ago at age 71, symptom onset one year ago. He was in the hospital for 10 days getting tests run prior to his diagnosis. He was admitted for shortness of breath. He went under general anesthesia and was intubated while in the hospital to get an MRI. If his bulbar decline was taking small steps backward, the general anesthesia (with intubation) represented a very large step backwards on his decline. This is apparently common with ALS patients going under anesthesia. Hospitals are quick to intubate patients for any procedure if they have any kind of breathing problem (they think it is safer). Beware of this if you are a PALS or CALS. We noticed the respritory decline after the MRI and opted to have the spinal tap under local with his biPAP machine on. It went easily without incident. They would have intubated him again for the spinal tap if we would not have objected. My dad cannot lay flat without his biPAP. Upright or with BiPAP he is okay. After 10 days and every test imaginable he got the diagnosis of ALS. Swallowing was becomming a greater problem. My dad's bulbar decline seems to be moving faster than his limbs. We talked to his Neurologist about a PEG, and he referred us to the Pulmonologist, he had a concern that if my dad was "put under" for the tube placement, he may not be able to get off of the ventilator. The Pulmonologist agreed, but said it was a calculated risk we should strongly consider taking. He wanted to send my dad to a GI doc to discuss tube placement. I had done some research and saw a few articles about PRG's (radiographically placed G tubes). I asked the doctor about this and he did not know of any interventional radiologists doing this in the area, but agreed that it would be a good option if available. I found out that Kimberly Clark makes a radiographically placed G tube kit and contacted the rep for the area (his email was listed on their website). He told me of two radiologists in the area with some experience doing these (although not a lot). I relayed the names of these doctors to the Pulmonologist and he scheduled the procedure the following week. My dad had to drink two cups of barium the day before surgery (it was thick and chalky like milk of magnesia, but no choking issues). The procedure was done outpatient, and he came home that afternoon with a drain and minimal discomfort. We went back the next day for a quick x-ray to ensure that everything was in place and nothing was leaking (no issues). He began feedings the following day. He took only one pain pill following surgery. He had lost 66 lbs prior to the tube. He has only had it a week, but he has already gained 3lbs back, and feels better after feedings.

One added benefit from the G Tube is that he can release air in his stomach that builds up after using his bi-Pap as well as occasional eating and drinking. Dad swallows a lot of air trying to get things down. He used to go to the bathroom often just to release gas, now he can just uncap his tube and he gets instant relief. Taking meds have also gotten a lot easier.

Sorry for this way too long post. I hope it helps some. There is a good YouTube video on this PRG procedure, which is actually very simple. Cheers.
 
My wife got hers 6 months after being diagnosed with bulbar ALS.

One of the smartest decisions she ever made.

What started out as 3/4 eating and 1/4 peg evolved into 100% peg as of November 2012 ( 14 months after getting peg )
 
Thanks again for the input. Wish I knew the magic words!
 
great post Matt, don't apologise for it being long!

We were lucky our gastroenterologist really understood the ALS and ensured that we did everything in ways that would not affect his condition.
 
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