Advice about feeding tubes

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southern lady

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Another beautiful day! I need input from my PALS. How do you know when to get a feeding tube. Those who have them: is the quality of your life better with one? I don't know if I'm being stubborn by not getting one, stupid to risk aspiration, or bravely trying to hold on to a shred of indepence. I would really appreciate honest answers from those of you who have been where I am. Mollye
 

Patsy

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Do it when you can still eat. Sooner the better. I should have gotten it earlier myself. I still could eat purreed foods when I got mine. I used it initially for my medication and extra fluids, for a year and a half before starting on a formula based diet via my feeding tube.
Patsy
 

Granny

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hi Mollye,
I agree with Patsy, get it before you need it.
I got mine in September and only used it for some meds until after Christmas. When eating got to be such a chore and I knew I needed help, the tube was there. It was a positive thing for me.
Hugs and prayers, Leah
 
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please, get it before you need it really badly...before your respiration is an issue.

it is in no way something to take away your independence. for my Momma it was a GOD SEND!

it is not noticable under clothes, etc.

and Momma said that the 'foods' tasted yummy..LOL

if you have the opportunity, and the need, dont let it go on out of fear of something. Believe me, its a good thing...it was for us too, *the ones who took care of her*

let us know how things are going, k?
 

rickmcmahan

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I just got mine last week. I can still eat most foods, but it takes me forever to chew it up and get it swallowed. Thin liquids are a big challange also. That was my main focus on going ahead and getting the tube so that I would not become dehydrated. I am adjusting to having it and have used it a few times for water, medicine and ensure a time or two. I plan to go to a new style of tube in about another month called a Button tube. It is flush with the skin and does not show like my current PEG tube does under my shirt. I am still up and around doing almost everything I used to do. The PEG tube kind of gets hit sometimes when I am handling objects and that creates pain. So yes, get that tube now. Don't wait till you have to have it. Hope you have a great day. Rick
 

donnah

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Feeding tube

My husband has informed us that he wants no feeding tube or vent. He is a heart transplant paient and has suffered with being sick for the past 6 years the last 2 with his new heart and then this happned. It is his opinion that he dose not want to die fom ALS he is to proud. This is the first time I used this group forum. Thanks for any input anyone can send my way
 

Al

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I have a friend that was given a new heart about 15 years ago. He's still going strong and is a fighter. Unless we commit suicide I don't think we should decide how we die. It is such a shame for your husband to give up now. What a waste of a good heart. It's not easy I know. I had a quad by-pass in July 99 and had to retire early and then got this and I'm not happy but haven't given up yet. It's crappy but it's life and I find that too precious to give up easily. Don't know if this the kind of thing you were expecting to hear but it's how one man feels. AL.
 

southern lady

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From simple procedure to emergency surgery...

Maybe I shouldn't tell you PALS this, but you asked how it went. Checked in Wed. to have tube put in, to go home next day. Very eminent, experienced gastro-entorologist did surgery. Woke up in excruciating pain. Said probably leaked air or something. By Fri. even my nurses were crying. Scan showed air in abdominal cavity. Surgeon call in; emergency 3 a.m. surgery. Air had dried internal organs, causing irritation, abrasions. He plugged leak washed area with somthing called markane. I go to ICU. No place for someone with ALS. No one with me, cannot move any part of my body, can't talk, call button on floor where it had fallen. It was hell.
But I survived. Am back home. Would rather eat any day. Ugliest thing I've ever seen;24" long. Have lost weight & strength I will probably nver regain. My relationship with husband has detiorated, He poured a can of stuff in me, is in there eating food. I"m sorry but after 2 yrs of positive attitude, etc. Little Miss Sun shine is mad as hell. I know I need to get over it, but now I'm required to have sitters & as you know, only us independent types get this mess. I WANT MY LIFE BACK!
 

Al

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Hey darling I'm sorry as heck things didn't go well for you. Good experiences should be shared as well as the bad ones. If the same thing happens to one of us down the road then we'll at least know not to suffer in silence because we think it's normal. We're all different and different stuff happens to us. If we think all is rosy then we are misinformed. We try not to do that here. Hope you feel better in a few days. Others tell me that once you get used to it the tube is a good thing. Tell hubby the least he could do is sit and watch you eat your stuff. Company does help with attitude. Take care. AL.
 

southern lady

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Attitude better

I knew I had to get over the anger. I'm better today. Can lie quietly while he feeds me a can of pulmonaid through tube then goes to enjoy crabmeat au gratin. Even let sitter stay last night without pitching fit. (When u can't talk, fit consists of writing large words on paper with much force.)
 

paula B

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southern lady i am glad your feeling better now,sounds horrible what you went thru.
My doc has talked to me about feeding tube. Iam really glad we have this place to come and vent also.
Paula
 

ronney525

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i have my tube over a year now. thankfully no complications. it was a good decision. a necessary decision. and i agree... the sooner the better. it was hard to think about giving up the pleasures of eating. but faced with the possibility of aspirating, pneumonia etc.... it was ok to do. since the beginning i have made all fresh foods for my feedings. i am glad i at least control my nutrition. and yes, its hard when people around me are eating delicious foods, but i am still here to enjoy my family. so, if you think you need the tube then it is definitely time. good luck with it all.
 

MtPockets

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What types of tubes?

Someone mentioned a button tube, another a longer one. Can you advise me on what my choices may be and about size diameter of tube etc:
I would like to learn from others mistakes if I can . I understand if you get too small a tube it may clog up. How do you unclog it. How does it feel when you move around, is it painful if you accidently hit it etc?

Thanks so much for any advice.
God Bless,
Big AL
 

rickmcmahan

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Big Al,

I probably am the guy who mentioned the Button Tube that fits flush to the skin. I currently have a PEG tube that has 15CM stamped on the tube itself. I assume that is the diameter of the tube. It works great. If I do have a slight blockage when I go to use it, I just squeeze the tube a couple of times with water in the hopper and it has always flushed out easy. Yes it hurts a little when you hang the PEG tube on something. It also pushes out against my shirt. I don't like that. I am still up and about so I am more prone to hitting it or hanging it on something. So that is why I am going with the Button Tube. It will not hang on anything! It is also easy to use. But you do, for some reason have to have the PEG tube installed first, then after about two months it can be replace with a button tube. Go for the button if you want to keep your stomach profile smooth and you do not want to hang the tube on things during the day. Hope everything works out great for you. Rick
 

MtPockets

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Botton tube

Thanks Rick for the info. I want to make sure they get it right the first time. I'm a big chicken when it comes to surgery.
God Bless
Big AL:)
 
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