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Miss

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Joined
Apr 11, 2010
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1,782
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Lost a loved one
Diagnosis
04/2010
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US
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In the Land of Cotton
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Way Down South
I just scheduled the insertion of a PEG for my husband - 7/14. We are waiting until we get back from a beach vacation. Now, he is waffling. Any words of encouragement I can give him? I/We know it is the smart thing to do, it just seems so harsh. He isn't having any trouble swallowing yet, but he is having speech issues. Will he have a decline after the procedure? Any words about what we can expect - really expect - would be welcomed.
 
That is great! It is so much better to get it early. It was a total non-issue for me and no problems at all. You guys are doing the right thing.

It only takes about 5 minutes. He mildly sedated me and left me in almost a sitting position. I was conscious the whole time. He sprayed a freezing compound in my throat and inserted the light/camera, found the right location and 2 minutes later it was all over - EASY.
 
Hi Missy, my husband did great after he got his over a year ago, we even fattened him up some because he had lost so much weight before. Good luck!
 
Oh boy, how many times have you heard this one? Every one is different. Doing it sooner than later is the way to go. My husband had his installed in November 09, We still only use it on occasion for food. First thing I suggest is to stay overnite in the hospital if possible. #2 Do not eat a big meal by mouth right after surgery. Take it easy for the first 48 hours. #3 Make sure you tape the tube to the belly, we didn't and the cap came off in his sleep and he woke up in a puddle of his dinner. #4 Do not be suprised when food and liquid appear in the tube that you can see. #5 Take pain meds to hospital when you go. A lot of Docs do not prescribe pain meds after installation. The majority of PALS have an easy time of it, but some have had problems. I think the longer you wait, the longer it will take for him to recover. It is a shock doing it early on, as it makes it real. Les had his put in 2 months after DX, and for the first couple of months he regretted having it done, but now he is so glad that it is over and done with. It is something all PALS will eventually need, so try to convince him that it is so much easier to get it done early on. HUGS Lori
 
Lori and Joel, I agree with you both. For some it is easy for others not so easy but for everyone it is the right step to take especially before you need it. I waited too long and lost a lot of weight that I have not yet been able to recover. I have regained 20 of the 40 pounds that I lost and am still working on it.

That said I have no regrets at all and know that I would not still be here without mine. Sure it is harsh and a real symbol of what this disease does to us but at least it is something that you can hide under your clothes and no one needs to know that you have it unless you tell them.

I would not expect any decline after the procedure, I had none and actually had the opposite.

Good luck and keep up posted!
 
To take a somewhat contrarian view, has his doctor recommended a PEG? You say he has no swallowing difficulties at present only speech problems. Is he a slow progressor generally? My first symptoms were speech difficulties and then swallowing. No limb difficuties at all and that was over 15 years ago. I still don't require a PEG and can still speak semi-intelligibly and swallow with few problems. I realize my situation is unusual but so are those of many PALS. If your husband has no swallowing problems, is not losing weight and is a generally slow progressor, I would not rush into a PEG.
 
I highly encourage your hubby to get the peg now and don't put it off. It is better to have it done while everything is working properly. We went to mexico last Sept and I had the peg placed in Oct I did not need it then but I need it now. You never know how things will go with als. I wel back in January and got a button peg put in and it is wonderful you don't even know you have it.
Good luck the proceedure is easy.
Judy
 
I'm assuming he's going through the VA. I understand his feelings. Before my PEG was the first time ALS "got" to me. The surgery is nothing but it was just the idea of this damn tube hanging out of me. Don't get me wrong it has simplified life a hundred fold but I hate the thing. I had the surgery early in the morning and personally I wish I would've come home. In the morning they showed how to use and clean the PEG but if they had done that earlier I would have gone home. The VA had no issues giving me pain meds while I was there and I already had a Rx for home. I think the surgery took all of 5 minutes from rolling me into the room to rolling me out and 3 of those were waiting for the doc. The only pain I had was gas bubbles the first day or two.

If he's like me he knows it's the right thing to do, he knows it's a simple procedure and easy to care for but no amount of rationalization changes the fact that it's something that shouldn't be there. I have mine and it makes life easy (I'd be dead without it) and it gives me no problems or pain but I still hate it. I need it, I'm glad I got it but I hate it.
 
We are having the procedure done by a doctor out side of the VA - private insurance. It will be an outpatient procedure and should only take about 5 - 10 minutes. All of our doctors (VA, MDA clinic and private) recommend getting it done now, so we are. Hopefully, we won't need it for a long, long time.
 
My husband feel the same way Jeff. HUGS Lori PS Missy, Most private insurance will not cover an overnight stay, but in my opinion it is criminal for an ALS patient to have this done on an outpatient basis. Just remember my phone # and call if you need to.
 
Thanks Lori! Hopefully, all will go smoothly.
 
95% of them do. HUGS Lori
 
Just make sure they show you how to use it, clean it and care for it. When it comes time the VA will supply the formula. We have it sent directly to the house. See if you can talk them into giving you some of the drain sponges. We had a male nurse at the VA hospital that sent us out of there with everything (2 boxes of drain sponges, 6 packs of wipes, 3 syringes and two bags just in case). I had mine done in April and I still muck up the gauze some days.
 
This is am hard step for me too. They mentioned it at my last clinic appointment, as something to start thinking about. I have been having swallowing problems for quite a while, 6-8 months, but it has gotten worse only slowly. I am just very reluctant to take this step. I'm squeamish about stomach contents, for one thing.

Still mealtimes haven't been that fun lately. In order to minimize choking, I've learned to avoid distractions. No reading, no talking. Just keep my head down and chew and swallow, chew and swallow. I'm not exactly a sparkling dinner companion. So in some ways it's tempting to just be able to sit and relax with a tube feeding.

I guess I'll see what they say at clinic, early August. My breathing has been ok, down to about 90 now so I feel like I have some time. My weight is stable too. If either starts to drop I'll get it done. Otherwise I think I'll probably get the PEG by the end of the year. Just have to bite the bullet.
 
Hal, the good thing about the PEG is not having to worry. You get your nutrition from the can or two of formula a day, and just eat your favorites. If it is a struggle to eat something, just down a can, then go for the ice cream or strawberry shortcake You can make mealtimes fun again. And go for the high fat high cholesterol foods too. New research has shown that having bad levels actually can prolong life and slow progression. HUGS Lori
 
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