I've been re-PEGged

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Beth, only you!

I love your sick humor. That is to say, I love the humor you put forth regarding your sickness. My humor is sick but yours is entertaining and informative.

I am sorry you have ALS and are going through all of this "stuff" but you have a way of informing us of your well being (or not-so-well being) that goes beyond simple tale-telling.

You are a tremendous educator!

My thanks as one of your students.

Zaphoon
 
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AHA ! EUREKA !

Binder clips!

If you can't find your ALS solution in the hardware store, or the kitchen drawer, try office supplies! I can't open these with my fingers either, but if I put it on the counter and use the palm of my hand to open it, I can get the tube in with my other hand. Still self-sufficient!

(Who said "roach clips?" Stay after class and clean the blackboards. And spit out your gum. And wipe that smirk off your face. :roll:)
 
So you are probably going to be skeptical but I was just about to suggest binder clips (the really big ones) or the clips some people use to keep their potato chips fresh (the tension isn't so strong, and the lever parts are larger; don't have to use your fingernails to pry open) but as I am sitting here trying to see how grip action would play out using one of them your recent post came on. I am hearing the Twilight Show theme music.

Lydia
 
Great minds ...
 
AHA ! EUREKA !

Binder clips!

If you can't find your ALS solution in the hardware store, or the kitchen drawer, try office supplies! I can't open these with my fingers either, but if I put it on the counter and use the palm of my hand to open it, I can get the tube in with my other hand. Still self-sufficient!

(Who said "roach clips?" Stay after class and clean the blackboards. And spit out your gum. And wipe that smirk off your face. :roll:)

Ooooo ... sounds like the voice of experience talking ... :twisted:
 
I miss you all, you are such troopers...........I miss Freddie so, I am trying to pick up the pieces but how do you? I admire you all! Keep up the good fight...
netty
 
Beth, Leave it to you to find the humor. You are a role model to many, whether you wish to be or not. The whole PEG subject is one of interest to many here. Perhaps the medical community could offer us more information up front, but, as this probably isn't going to happen, your comments, and those of others who've already been pegged are a huge help. It seems to me that many of the things I've had to figure out for myself (or have learned via this forum) should have been part of the "standard brief" to me as a patient by the professionals.

p.s. Netty, it was so good to see you post, come back more often when you're ready. You're much loved and much missed here!
 
If you haven't gotten a PEG yet, don't read the following. The starter tubes are REALLY easy to use.

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OK, I've finally got the new tube figured out. It's a whole other procedure than the long tube, but I managed to do it solo this morning, without the contents of my stomach spurting up all over my face and medicine cabinet. (Which reminds me of a very funny scene in Portnoy's Complaint, altho it had nothing to do with feeding tubes.)

This model has to be used lying down. If you're standing up, it's all going to come out rather than go in.

So: assemble materials and prepare site. Dissolve meds in small cup, get cup of supplement, prepare easily grasped bottle of warm water for flushing, funnel, tube brush. Spread towels on bed, have box of tissues nearby.

Go to bathroom, open tube over sink. Attempt to dislodge remains of last feeding, which have turned to cottage cheese in tube, using funnel filled with warm water. Poke brush into tube and jab it up and down. This will hopefully irritate the solidified supplement enough that it will release its grip and get ejected. Once visible tube is empty, replug tube. Wash out sink and clean mirror above it. Wash face if necessary.

Go to bedroom. Assemble materials on table, lie down on bed with knees up, and position open water bottle on crotch leaning against legs, unplug tube, insert funnel (in the tube, Glen. In the tube). Funnel will keep trying to slide out, but grasp it and the tube firmly together with left hand, and flush with small amount of water. This will start the intake process.

Pour meds into funnel. Still holding funnel and tube together hard with left hand, flush with a little more water, pick up cup with supplement, pour serving into funnel. Set cup down, remove tissue from mouth damming up drool, and blot drips that fell from the bottom of the cup onto your abdomen. Replace tissue in mouth, pour another serving, remove tissue, blot, etc. When feeding is complete, flush with whatever water is left in the bottle from tipping over during activities, and using both hands, gently remove funnel. While in a prone position, nothing will spurt out.

Replug tube, throw towels and nightgown in laundry basket, wash lower half of body, wash utensils, and sit upright at computer for 1/2 hour until stomach contents are settled. During digestive process, write sarcastic posts to forum.

Plan B. Get someone to do it for you.

Don't know how long I can continue to solo on this. My hands are mighty weak. My niece, who helped me work out the prone technique yesterday, pointed out how much simpler it would all be if the funnel could screw into the nozzle of the tube, so that air or other stuff in the stomach couldn't keep trying to force the funnel back out and you wouldn't have to hang on for dear life trying to keep them together.

I would love to have my long tube with the clamp back. Even the heavy binder clamps can't pinch off this tube if you are standing, as it is very stiff plastic. My gastro guy is the greatest in the world, but was clearly not thinking of how an ALS patient would do this procedure alone with this kind of tube design. (Actually, he didn't know I was doing it alone, as he said something about "whoever is taking care of you is doing a great job." When I lose the use of my left hand completely, in about 2 months or so, I'll have to work out a new plan. Maybe go to one of those automatic drip machines I can drag around with me in an IV stand.

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Netty, it is so nice to see a post from you again. We all miss you and Freddie; through you, we got a chance to know and love him. Take care.

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Rose, your hair is beautiful! Looks a little lighter, and is very glamorous and youthful. A new look for the upcoming birthday girl?

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Plus, the tube still sticks out in front. I am getting smart-ass remarks from visitors. I plan to make a sign and pin it to my dresses (I only wear things now that go over my head and hang loose. Cannot pull up slacks or undo snaps).

The sign will go above the tube, and read: "This is not a feeding tube. I'm just happy to see you."
 
Beth,
Just wondering if you couldn't get the doctor to put an extension on your peg? Seems to me that one should be able to lengthen it with a wider bore tube to fit over top of the short one, and keep it in place with some sort of glued fitting. I believe a plumber may be required <g>. I continue to admire you so much.
Laurel
 
Beth-

You are hilarious! I LMAO as I read your post! I'm on 1st floor, Jim on 2nd floor-he called down "what are you laughing at?" "Never mind" I say! So sorry to be laughing at your woes- but thanks for making us laugh! (I know- you do what you can!)
 
"I believe a plumber may be required"

OK, Beth all you need to do is to go to Home Depot and get a 90 degree pipe elbow, an on/off valve or tap, a threaded fitting for the end, a small holding tank and some epoxy glue and your problems are solved. You can load up the tank with enough formula for a week and then just turn on the tap whenever you get hungry.

Laurel, I'm not making fun of your suggestion, it does make sense. I just had this great (but silly) idea!
 
Barry I think your great (but silly) idea is much along the ideas of my vision. I can't think of any reasons it wouldn't work. Can you?
Laurel
 
Mare, I can't tell you how many times that I have been in trouble here for laughing at stuff I read on the forum. It is really hard (impossible) for me to explain Forum Follies to someone who doesn't know the story, the people and my connection to both. So I get in trouble for saying "never mind" and a whole bunch of that trouble is caused by Beth's posts.

Beth, don't stop. Your stories are instructional and entertaining at the same time!
 
Beth, I cheated and read ahead, even though I'm still amongst the unpegged. Sheesh!

Its good that you understood the importance of spelling out the insertion method to Glen, although you're probably denying him some fun from which he could squeeze several ensuing pages of totally non PC repartee`.

Seriously though, I thought there was a variation for the more advanced PEGger, that protruded less, rather than more, and had a button type cap. Am I delusional, or did I read Irma say her son had that type? I'm allergic to virtually every type of tape if it stays on my skin long enough, was planning to loop the tube up to my bra somehow (except I'm not wearing one much anymore because of my shoulder blade)


Barry and Mare, I know! There is no good way to explain the forum, it just has to be experienced! I burst out laughing just now reading the follies thread (where Barry had worked my giant hands into the story) It is so great to not feel anywhere's near alone, even though uncommon circumstances, as ALS is supposedly a "rare" disease, have brought us together.
 
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Ok Rose, first you banish your Nurse Rose avatar and then you tell us that you don't wear a bra anymore? Stop being so cruel! :p
 
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