Feeding tube and DPS

[Cricket]

Keeping my fingers crossed

 

[Tami jerkins]

My husband also will be getting a feeding tube this week he will not be put under due to poor lungs they are going to do it in radiology have you heard of that before

 

[patrick123]

Hi tami, I have heard of not using general anthsetic. What's what they were going to do with me if I was just getting the peg. They took a CAT scan of my tummy to know where to place the tube instead of the big tube that goes down your throat so it's much less invasive
Patrick

 

[HelenL]

Patrick, good luck with the pacer. I got both the peg and pacer less than a month ago and though I felt like a wet noodle for more than a week, everything is going well. I don't use Miss Peggy yet but Sparky is working out daily!

 

[chrisroski]

Helen how are you making out with the pacer? Thinking of getting one, but not sure if I want wires hanging out of me. Do you find your breathing to be that much better? Do,you also,use bipap?

 

[HelenL]

Chris, I am doing well with the pacer, though think they should have come up with a better design for the wires! I 'm starting to use it at night (its on right now) and will be going in next week to have the settings adjusted higher. I don't use a bipap yet. I feel like my voice is less breathy when I use it.

 

[chrisroski]

I use bipap, but my neuro encourages patients to get pacer also. I already have a peg tube for a year now, but really don't want more surgery. How uncomfortable is the pacer, is it like shocks going through you? Can you see the wires under your clothes? Just trying to get an idea what this thing is really like. They gave me pamphlets to read, but that's not the same as talking to someone who actually has one.

 

[HelenL]

Mine is set really low still, just feel a flutter inside. The wires are tiny and I don't really notice them much just a wire going from the connector on my stomach to the battery pack. I think you should be fine with it. I keep a small bag on the back of my pwc which holds the battery pack.

 

[Jeff Long]

Chris,
I got my DPS in June and it really is a snap. A little down time (about a week) after the surgery, but we all need a break anyway! The whole enchilada - wires and "plug" - are very small and do not show under your clothing. The only time I notice it is if I turn over onto it in bed. When you're pacing, it feels about like setting your cell phone on your skin while it is on 'vibrate'. Very mild and after a few minutes almost not even noticeable. I zap a few times a day when it's convenient... driving to work, sitting in my office, watching tv, etc. It really is not a big deal, and if I can figure out the mechanics, I'm going to start charging my iPad with this darn thing!
It's suggested that you keep it dry in the shower and 'they' recommend using the Tegaderm patch, but I use press & seal, available in your local supermarket with the other wraps, foils and bags. Cheaper and works just fine. Good luck to you!

 

[betterdays]

I have a feeding tube, its not to bad. Don't know about other , the tube was simple for me took less than an hour. I was down to 116 and now had it for a month and I am up to 123 pounds. I was told this dreadful news may 24,2013. Ruby

 

[marypat]

for those interested I put some pictures in an album of my pacer and tube. these r all within a week of surgery. Patrick the emg showed the samething on me but I talked them in to it and it turned out I was a great canidate

 

[marypat]

btw I don't worry about keeping it dry except to save the dressing. I use press n seal food wrap for the shower. works great.

 

[Outdoor_Man_Nc]

I am finally back in this group with a different name. I had the PEG and pacer installed at the same time and spent one night in the hospital. A cheaper way to cover the pacer connector is to use Press and Seal over it.

 

[patrick123]

I go for my pre op visit this tues. for blood work up EKG all that stuff

 

[tmasters]

I posted this privately but now realize this may be helpful to somebody else:

A year and a half later, I have no regrets. Yet I don't "swear by it" or even really know if it helps. Many others seem to credit its use for a longer life, etc.
I use it from bedtime to morning only now. I found it uncomfortable, or just annoying, to pace during the day. At night while on bipap I don't even notice it.
On the plus side: My FVC was measured at 47% on Tuesday, virtually the same as pre-surgery.
On the other hand: it does nothing for progression in hands and legs.

-Tom