Peg

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Rhonda

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Well I have hit that bump in the road. I went to clinic at Emory today and they want to put in the peg. I wasn't ready for that news. I lost 4lbs. but they want to do it while I'm healthy. It just knocked me for a loop. What really angered me was a nurse saying I know exactly how you feel EXCUSE ME how does she know unless she's the one getting it. The people here on this forum knows exactly how it feels, some have been there done that. I just needed to vent for a moment. Thanks for letting me.
Rhonda
 

patricia1

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I am sorry you are upset about the peg and I dont blame you. It will take the anxiety of choking on food. Good Luck Pat
 

Montana Carol

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Sorry, Rhonda!

That must've been rough, Rhonda. Did they say why it's time for a PEG? Do you think it's time? I'm dreading it for myself, but everybody says it's not that bad; so I'm trying to be positive about it. Remember, you're in charge -- you're the decider, as somebody once said. So give yourself time to think about it and get used to the idea, and don't let 'em rush you. You'll know when you're ready. Sorry you have to make this decision at all, but I'm glad we PALS have this option available to us when we need it. Carol
 

CindyM

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I am sorry your health is getting a little worse, Rhonda. Feel free to vent anytime. Cindy
 

brooksea

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Rhonda I PMd you. But would like the forum to know why the clinic thinks you should have a PEG.

Just 4 lbs loss?
 

Al

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Hey Rhonda 4 lbs is not a big deal unless you only weighed 85 to start. Have you got choking or swallowing issues as well?
AL.
 

nspoc

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Hi Rhonda -

My PALS, Pat, had her tube put in at 47% Forced Vital Capacity. There is a medical standard now that says a PEG should be inserted around the 50% mark. The reason is that when breathing is worse than that the procedure can be dangerous because of the sedation (not the same as anesthesia).

Pat used the tube occasionally for about a month, now has not used it in 12 months. The assumption is that you will need it and it is better to place it under non-emergency conditions. Pat is glad she did it early.

MANY people in our clinic have resisted this medical advice out of fear. I saw two people die with FVC in the 20's the same week they placed the tube, I also saw one do really great at that level.

One more thing - some research just came out that says bolus feeding greatly stresses breathing. That is a way of using the tube where you use a syringe to quickly put in the feeding. There are other ways to feed that are easier on the patient, but even at our ALS clinic they taught us bolus feeding, and that is what we demonstrated back at the time of tube placement.

Bottom line - the PEG is as much about breathing as it is about feeding. I urge you to go ahead and do it while you are healthy enough. Plenty of research shows it prolongs life by providing adequate hydration, as well as good nutrition. Very few things have been shown to affect the life span of PALS, but the PEG and bipap are both known to extend life.

My vote - it is not a bad procedure - trust your clinic if it has ALS experience - get the tube.

Like the others say - I understand the fear. But please talk to some PALS who have had it - it is worth it.

Good luck! Beth
 

bucky

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Hard decision I know. I had the peg put in on March 5th of this year. I was very apprehensive. I had lost thirty five pounds since the onset. Eating was an hour of choking and coughing so I didn't eat much. I have regained some weight. My energy level seems somewhat better. Its pretty easy to use. I sure miss real food, but I don't miss the coughing and choking and having food all over the front of my shirt. We have traveled since getting it and so far its been pretty easy. If you decide,I can list a few tips, nothing major.
 

brooksea

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bucky,

Please list your tips, I'm sure those that haven't gone that route yet would like them for future reference. I know I would for my husband.

Thanks
 

bucky

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http://www.simplifiedtraining.com/
Jimercat, When I got home I had some leakage or something nasty leaking around the wound. I take a 3"X3" gauze and put a antibiotic salve on it. I make Y cut in the middle of the gauze and place it under between the button and my skin. This solved the problem quickly and I still do this even though its healed and no problems. I feel it keeps out debris and prevents further problems. I also use paper tape to secure the tube to my stomach, much better on the skin than conventional tape. I suggest getting some spare parts to keep on hand. The end of the tube has a spigot where you place the syringe. The little tab you use to open for the syringe will come off eventually. I use a product called Jevity. It has all the nutrition you need to survive. It is also one that has adequate fiber to help keep the patient regular. Jeivity has different products based on calories. Experiment with the option's may encounter problems with reflux, and regularity. This is the reason to try different options. I crush a prevacid tablet every morning to help control any reflux. I also pour some ginger ale in the tube. It taste much better than jevity if you do get a little reflux. I seldom have a reflux problem anymore. Coke cleans the tube well, not Pepsi just coke. Why I don't know. I have found meds that are available in liquid form. I have vitamin supplement that is liquid as well. A good pill crusher is something you want to get. I let gravity handle the jevity going in the tube and never force the feeding with a syringe. The web site is a short video you can purchase about having a peg. I didn't buy it. I can still use my hands and arms so I do all the feeding unassisted. I am just thankful this is available. Many of you that have a peg probably know this information. If anyone has any suggestions for me, please let me know.
 

ilgal

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I'm new to all this and hope I'm nowhere near having to make a decision about a PEG, but sure would appreciate hearing more pro and con comments about getting one. I'm just not sure I will want to extend my life. If I choose not to have tube feeding what will the end times be like?
 

hboyajian

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Hi Rhonda, I agree with Beth about getting the PEG tube earlier on when you have as much pulmonary strength as possible and still are maintaining most of your weight. It sounds like your doctors are giving you enough advance time to begin thinking about the procedure before it is more critical. I think it is better to start getting used to the idea, talk to the gastroenterologist about the procedure and any options that are available, check out the best place to have it done, and go with it when you are assured that it is the right choice for you. Holly
 

Saubier

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Rhonda,

Even after you have the PEG, you can still eat normally as long as you can. Some foods, like ice cream, are easy and good.

Pappy
 
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