Peg tube info. wanted, please

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jeeper

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Apr 15, 2009
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Reason
PALS
Diagnosis
01/2007
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US
State
Oklahoma
City
Woodward
Hi. My name is Greg Hickman. I'm 51 and was diagnosed in 2/2007 with ALS. My wife (hopeful warrior) has been on this forum for awhile. She has called my attention to lots of information I've appreciated. Now I've got some questions of my own, if you are able to help me.

My MDA doc brought up a PEG tube today. Does anyone have any experience with one who might like to share info?
 
Yes, I have had one for 2 years and they are great! What would you like to know?

You can also scroll down to the bottom of this page and click on other links for information.

Welcome to the forum!
 
Hi, Greg ... welcome to the forum (but so sorry you had to join us).

I had a PEG tube put in about 2 months ago, and it has really helped my quality of life. My swallowing had become so bad, I was spending hours a day trying to choke down milkshakes, Ensure, etc. Now eating a meal is a 20-minute operation: I can get 1,500 calories and 60 gr. of protein with three "feedings" a day.

The tube is much smaller than I thought it would be (I pictured a garden hose!). The opening to the body is a little smaller than a belly button, and you attach a kind of funnel to the tube for the feeding. I am able to do the feedings myself, as I still have functioning in my hands. It's extremely easy to use.

My surgery was a little different than normal, as I also have heart disease, so my gastro guy had an anesthesiaologist (sp?) to knock me out quick, and bring me back quick. I think most implants are done under local anesthesia. The actual surgery itself was about 15 minutes. Went to hospital at 9 a.m. and was home by noon.

I still eat treats and drink Diet Cokes by mouth every day.

In case you couldn't tell, I am very pleased with the tube! It is one of the best "symptom managers" available to PALS.
 
Hi Greg and welcome! I had a peg tube "installed" (sorry for the terminology, I used to work in a truck repair shop) in February. After losing about 40 lbs I am happy to say that I have gained almost 11 lbs in 1 1/2 months. The operation was not really difficult and there was very little pain involved. After a few days of getting used to it it becomes very easy to take in enough calories without the effort involved with eating. I use a formula called Resource 2.0 made by Nestle which provides 500 calories and 20g of protein per 237 (8 US oz) box. I am still able to eat many things (very slowly) and supplement with the formula. The tube is also great for taking in water as well.

I was at first hesitant about getting a PEG tube but now I recommend it highly. It does make your life easier with very little effort. I hope this helps and if you have any specific questions ask away! Also like Joel said there are a lot of threads here about feeding tubes that you can search.
 
Hello Greg, You must be a mind reader. I was going to post a similar question. My ALS clinicians are encouraging me to get a peg tube as well. I was diagnosed last June with bulbar onset. I am having real trouble with the idea of the peg and would appreciate it if people could share their reasons for having one put in. My breathing is getting worse as well and I am definitely not going the ventilator route. Is there any reason then to get a peg? Also if you have one put in what if you want taken out? Is this a legal problem? I appreciate all the support and information that this forum provides, many thanks.
 
This was also a good thing for my mom to get but she doesn't seem to want to take in what she actually needs as far as the formula and water. I don't know how to encourage more intake and the importance of it. I have also sent a few posts to her from here where people are discussing it but it doesn't seem to help. Maybe the current hospital stay will sink in.
 
Tfisher, is your Mom in the hospital? I hope she is okay and this motivates her to increase her intake. I'm sure you have told her about the importance of good nutrition. It is vital to proper organ function and overall health. Maintaining weight is the best way we know of to slow the progression. Tell your Mom we are all rooting for her! Please keep us updated and know that you are in my thoughts.
 
Yes. My dad and I are sick so of course it eventually hit her. A lot tougher when you can't get a good cough going to clear things up.
 
I really hope she gets better soon!
 
My husband had a peg "installed" in December. It has really taken so much stress out of meal time. He now eats purely for pleasure. He averages about 5-6 cans of formula a day .....plus lots of water. Today he had formula...ice cream sandwich..chicken..and mashed potatos! We are willing to answer any questions you have to take your fear out of the whole procedure.
 
Hi Greg hope everything is good im John iv'e had als for 18 years i had a peg tube for 3 years it was the best thing i did im 6 ft got down to 124 lbs now 173 lbs i dont eat by mouth any more at all but use to it.
GOD BLESS
John
 
Hi - I'll just reinforce everyone else's remarks. I had my PEG tube "placed" (my doctor's term) last August. It was a life-saver.
Like BethU, my hands are still good enough that I can feed myself. The tube is easily maintained and just makes life so much
easier. I eat only when I want to, like tonight when my wife made a favorite, and a double-espresso every morning. I go through
5 cans of ensure and 2 of jevity 1.5 every day, plus I always blend up a can of soup in the evening to get some "normal"
food into me. Your routine changes but it just isn't a big deal. Just took a professional trip to Chicago and went to
dinner at a friend's house and got them to blend up some soup and I "ate" with the family. Sooner is better since as one's
weight drops and one's breathing gets weaker, placing it gets more risky.
I wish you the best
Dan
 
Marianne ... I think the best reason to get a PEG is the instant improvement in one's quality of life. I love instant gratification, and we don't get much of that with ALS.

I would not worry about future decisions (to vent or not to vent) with other procedures. The PEG will give you increased strength and comfort just from being able to get adequate nutrition without a struggle. Maintaining one's weight is also known to slow the progression, so that's another real, concrete benefit.

I can't see a downside to it, except that you've got this little tube dangling from your midsection, but it can be tucked away very discretely.
 
PEG and Vent

Unfortunately my brother Tim had to opt for the PEG and Vent last July. We were just using the PEG for Meds. Next week he will start the Nutrition through it. His swallowing and speech is getting worse. He was Venting part time. He now has to go on it often. He gets breathless within a few minutes. You will now when it is time to Vent. We have been through it all now. He is going down hill. I will be glad to help with any questions.

Lorie
 
Beth, Thanks for the encouragement. I was at an ALS symposium yesterday and learned quite a few things. I don't know where everyone lives or if they are baseball fans but one speaker said "That as Red Sox fans will never be beaten by a disease named after a Yankee! " He got a loud cheers, yes we are here in the Boston area. Marianne
 
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