Peg

[ccurths]

After fighting the insertion of a peg for almost a year, I started dropping weight by the day and said "how soon can we get one in" ive had it for two months now and have adjusted nicely. Not gaining much weight but I stopped losing. I have bulbar onset and had ALS since 2009. The peg saved me from starving to death. I still have my legs and arms although arms and hands are weaker.

 

[Ms. Pie]

Congratulations on a sucessful procedure and experience with the Peg! I'm not at that point yet but am pretty weak in the hands and legs. Keep us posted Sweets! And welcome to the forum family!

 

[ccurths]

Thanks I've been on here awhile but never posted

 

[Ms. Pie]

I saw that. Well, it's nice to see you ccurths!

 

[ccurths]

Thank nice to meet you, too

 

[susanf]

Please keep us posted. I have bulbar too but I'm still swallowing ok. The speech is going first on me. Do you find it easy for self care?

 

[susanf]

Please keep us posted. I have bulbar too but I'm still swallowing ok. The speech is going first on me. Do you find it easy for self care? Thanks

 

[tmasters]

Glad things went well for you with your PEG. I got mine a month ago and all is well with mine too!

Welcome to the forum!

-Tom

 

[ccurths]

Thanks guys,
I still have use of my hands and arms although getting weaker. The peg is easy to use if you follow instructions. I pour mine formula in a syringe which fits in the end of the tube. It goes fast. First and after I flush with distilled water, or s juice. I take five cans of nutra a day, but I'm making some other mixtures with the blender. There are recipes online. The cans are 375 calories each.

 

[Ms. Pie]

Excellent ccurths! Tell me, what do people do to satisfy the desire to taste things when you can't swallow? Just wondering.

 

[ccurths]

That's a tough one. I can still taste some soft foods, but only a tiny amount. My tongue won't move the food around and my palate has dropped big time. My mouth has mucus 24-7. I had aspiration pneumonia right after I had the tube put in so I'm pretty much all tube feed now. I would sy if you are to the point where swallowing isn't possible it's time for a peg only because choking is dangerous. I did that with what I have left when I was eating solid foods. I was using my suction machine to get it out! I miss eating but not the misery that came with it.

 

[ccurths]

Also I was going to tell folks that they dont have to tape the peg as they will tell you in the hospital. There's a product called G-Tube Holder that you can put the tube in. It's a elastic waist band with Velcro fasteners that has a pouch on the front for the tube. The tape was a joke. You can buy them on amazon.com.

 

[Blubear]

My dad also got a PEG and we were so glad he did! It would have been a horrible thing to have had to starve to death for sure. We gave him small soft things to just taste and were on the ready with the suction device just in case. Gotta be careful with that suction device though, the more you use it, the more you will need it. They do have some sprays out there like coffee flavor and each spray is suppose to be like taking a sip, but we never got to use them. Oh and ccurths, welcome to the wonderful family here! And if you do want to put some weight back on, talk to the dietitian and see if you can up your cans per day hun.
Hugs, Kari

 

[ccurths]

Yes we are going to increase my amount, the dietician wasn't giving me enough to gain weight and thanks for the warm welcome!