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codyclan

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My Pals is steadily losing weight -- 40 pounds since diagnosis in Feb 2014. He still eats by mouth but it is becoming more difficult. I have modified food textures, lots of soups, soft foods and I use the stick blender on many things. He still indulges in an occasional cookie and few chips on occasion. Lots of throat clearing when he eats and he has had a few episodes of choking/gagging. I say gagging, because it appears that he is choking but he keeps himself calm and can breath through his nose although food is stuck in his throat. His cough is not very powerful, but he has, to this point, eventually able to clear his throat.

Our clinic doc has been saying for the last six months that if he wants a tube, it is definitely time. His FVC is at 50%. Doc said he would order a bi-pap. We already have a cough assist, which he hates but still uses semi-regularly. He is saying that he is not at all sure that he wants a tube ever, and does not want to discuss further. He also says that he doesn't want a bi-pap, even though I think it will make him more comfortable.

Here is my quandary. I feel that if I push it and force the continued discussion, he will agree for me. But I don't want him to agree to this for me, necessarily, and yet of course, I do. I don't know where that line is. He has always had a bit of a stubborn streak and if I push some things he ends up being grateful (like the electric wheelchair and lifts on the toilet), but on the other hand, he was clear from the beginning that he didn't want a vent or other measures. The tube was always a gray area for him. In the beginning he said he might consider it if eating became too much of a problem, but now is saying that he doesn't want it or doesn't want to talk about it yet(emphasis on 'yet' is his) Doc is respectful and doesn't push.

I realize that we may have already passed the point of no return. His speech is still mostly intelligible and he can still mostly transfer independently, walk a few steps in the house and, of all things, folds laundry (it takes him forever, but I am grateful, none the less!).

Anyway, just looking for some feedback or insight.

Tracy
 

Nikki J

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Hi Tracy
This is something I am pretty passionate about so take what I say with that in mind.

My mom did not want a tube. We respected that and it was pure torture watching her try to eat, choke etc.

My sister agreed to one in theory and put it off too long. Her husband respected her wishes and did not push. I finally convinced her and she had it at the last possible moment She wished she had had it sooner.

If your husband wants a tube really do what you can to make it happen soon. Only you know how to approach it. If he does not know what he wants try to talk about the issues. It will be easier for you. It will spare you anguish of watching him choke and save you time spent helping him eat. He can always decide to discontinue using it if he has had enough. If he can swallow safely??? He could still eat. If he does not want one you have to respect it but let him know there comes a time when it really is too late( breathing too weak or even more common too malnourished for his body to accept refeeding)
 

codyclan

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Nikki,
My concern is that he is already too malnourished to accept the feeding. He is down to 140 pounds and while he eats three meals and several snacks throughout the day it is in very small portions. I am amazed that he can subsist on the amount of food he consumes. He alternates between constipation and the exact opposite. So I am concerned that he is already not getting what he needs, nutrient wise. He will drink ensure, but that also, quite literally, goes right through him. So what happens if his body won't accept the feeding?
Tracy
 

affected

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It's tough Cody.

My Chris was already in starvation mode. He was repeatedly told that he needed the peg early, but he refused and it was urgent surgery by the time he said he was ready.

He never tolerated the feeds, he continued to lose weight at a similar rate.
However I could get fluids into him, and I could get meds into him.

I can't give you the answer, but I would suggest that he needs to be told maybe once more that as his breathing is declining his options are narrowing and have all the pros and cons presented again.

Many PALS refuse the peg and pass peacefully on their own terms.

But if they continue trying to eat and choking and aspirating it is awful.

If he accepts the peg because you beg him to - he can still refuse any feeds and even have it removed if he wants it out. That could be worth remembering as you talk with him.
 

Nikki J

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My sister was emaciated when she got the tube. What happened was it took a while to find a tube feeding regimen that did not cause cramps and diarrhea. The standard jevity that is often given was horrible. Eventually she got a formula that was " predigested" ( it was no more disgusting in smell or appearance that any of the others) and started very slow pump feedings gradually increasing amount decreasing time. Eventually she switched to a more whole food formula. It took time and patience. You can't tell what will happen but it sounds like if he is going to do it at all it is time. I don't think there is any test to tell you how his digestive system will adjust but know there are options including blending real food if you want
 

codyclan

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Thanks Nikki and Tillie,
I don't want to pressure him into something he doesn't want, but I don't want him to starve or choke either. Fine line. Your feedback is very much appreciated and I hadn't even thought about mentioning having it removed or present it as he can stop using it at any time. Thanks again!
Tracy
 

RooRoo

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I had trouble with the formulas. Most are pure chemicals and sugar anyway. However, I never have had any trouble with real food blenderized in a Vitamix, nor has my tube ever become clogged. I can "eat" all kinds of stuff that is good for me that I wouldn't otherwise eat by mouth. I love it! I still eat some things by mouth, too!
 

4tloml

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Tracy, it's so hard sometimes to walk that line of us wanting certain things for our PALS because we think it would give them better quality of life, but them not wanting them, especially when we are committed to honoring their autonomy and independence as much as possible. Between a rock and a hard place.

But choosing to get the tube placed while the surgery is still safe enough (respiratory-wise) enables more choices down the road. Tillie is so right--he can choose to use it or not at any time. ALS takes away so many choices that adding options for future QOL seems to me (and my own PALS) a good thing. My PALS got his last month and told everyone he wouldn't be using it for food, just for meds, but already on days when feeding himself gets too fatiguing, he is more than happy to sit back and let me run a high-cal feeding through the tube. He's very happy he made the choice early so he has more choices now.

Thinking of you--these decisions are not easy.

--Cindy
 

AP1981

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I just had mine put in. I really don't want it as i feel it will extend my life where malnutrition would otherwise knock me off.

I got it as a means of getting medicine and pain relief in my last days if needed.

I figure I can change my mind and use it for nutrition later but if i did not get it my lung function my not be good enough for surgery.
 

affected

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@AP yep look at it as extending your quality of life, more than simply extending your life.

Being able to stay hydrated and safely get meds in is a great thing.

Lots of PALS also find that within weeks of having the PEG placed they realise they are often too tired to eat well, especially with swallowing issues. So they start supplementing and find it great.

Remember it means you can eat whatever you want that is really tasty and easy to get down, and supplement your full calories and nutrients with the PEG.

We used to sing a silly song about Peggy Sue ;)
 

Dawood

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You can't make someone get surgery they don't want, but you can certainly try to make sure they are fully informed. I have belonged to two ALS support groups for four years, and one thing I have never heard anyone say is that they were glad they chose not to get a feeding tube.
 

lgelb

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Dawood, you will find few 100% truths in ALS. As an example, we were and are happy that my husband, despite being referred for a feeding tube, opted against it due to competing risks and ate a fairly wide assortment, maintaining his 250# weight, for nearly 2 more years before he died of respiratory failure. Everyone is different.

Best,
Laurie
 

Atsugi

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Agree with Laurie.

And in my wife's super-rapid progression, weight really wasn't a factor, so a feeding tube would have been an unneeded surgery, and the recovery time would have shortened the few good weeks she had remaining.

We were glad we refused the feeding tube. Everybody's different.
 

Staying strong

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Best Thing we ever did for My wife was the Peg Tube. Eating meals had become very Stressful and dangerous. She has lost a bunch of weight also. After the tube her weight and energy level went back up. For us it was a Home Run. As a side note after trying a couple tube feeds we found " Liquid Hope" and have been using it for 2 years now. very easy on her stomach and is Full of all the good stuff. And after some work we were able to get insurance to cover it. Good luck
 

SKlocinski

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Hubby was also resisting the feeding tube. He is very weak and has lost 60 lbs since last June. I also didn't want him to decide to have it because he thought I wanted him to. Anyway we had a scare on Friday morning when he suddenly became short of breath (he had been breathing fine). He wound up in the hospital for a couple of days. The breathing issue corrected on its own and since he had been very fatigued the week before and especially so Thursday, the doctors thought that he was just so fatigued and dehydrated (he wouldn't eat or drink anything Thursday) that he had a "really bad ALS day" and his muscles just could not function well enough for him to take a full breath. We talked about trying Bi-Pap and he agreed to that. This morning I just decided that if he was determined not to have a feeding tube, we needed to have the doctor refer us to Hospice. He said he was "on the fence" about whether to get a feeding tube or not. I told him he needed to make up his mind or it would be too late and the feeding tube would not help (don't know if that is 100% true, but, hey, whatever it takes). So he decided to give the feeding tube a try. Hopefully we can get it done quickly.
 
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