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Running on juce

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Joined
Oct 11, 2008
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Diagnosis
07/1999
Country
US
State
Florida
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Cocoa Beach
Hello Friends! Remember this: THE TUBE IS YOUR FRIEND! Don’t be afraid of it.

I have had a peg tube for 5 years. I am 64 and I am a victim of malpractice.

My favorite tube is Novartis and yes there is a difference. I have gone through 8 peg tubes.

Some of the other tubes have problems with the cap on top failing apart. I have the tube replaced every 5 to 6 months. When going for longer periods of time, I found that the tube would lose the water in the little balloon which retains it in the stomach. Also, I hade trouble in hospitals when the tube fell out. Some doctors have no clue what to use to inject in the side port of the tube to inflate the balloon. Air or water?
The answer is sterilized water or sailen water. I found that the minerals from regular tap water build up inside the balloon and it will not completely deflate when the tube is being removed. That means that the DR. Has to pull real had to pull the tube when replacing it. So I always have it replaced no longer than 6 months. You don’t want the DR. Pulling the tube with all his strength for several minutes because the little balloon is larger than the hole in the stomach and outer wall tissue. Believe me it hurts like hell!
For a year I had infections around the peg tube site. I finally figured out how to stop the infections. I had been using the 2x2 cotton pads with a antibiotic ointment. That was the problem. For the past 3 years, I do the following: I have the round stopper ( disk around tube pressing against the stomach) pulled back from the skin so the tube is visible at the point of penetration. I found this allows air and the site to remain dry. When I shower , I just wash the site with soap and rinse. That works great. I found that the Nexcare paper tape found at Wal-Mart holds the tube to the skin and there is no discomfort to the skin. Its the best I have found. If I have some discharge from around the site, I use a tissue wrapped around the tube for the day and remove it.

I supplement the 9 cans of Jevity with vitamins and Benifiber. I add about 30% water to all the can foods. I have no less than 60 ounces of water a day. I use the Wal-Mart/Sams 20 once water bottles to shake up my vitamins and Jevity. I suggest using a small strainer to prevent the tube from plugging up. Sometimes the tube plugs up just below the cap on the tube. This will sound crude but I use a pair of long nose pliers to gently squeeze the particle in the tube and it always flows through.

I suggest asking your DR about what I do before you try it.

I am unable to take anything by mouth.
I had 1 lymph node in my neck that had cancer. There was no other cancer in my body. The doctor over radiated my face and neck. This destroyed my right mandible/jaw, inside my mouth and throat. I have meet two other people who had the same original problem but their DR. had brains. They are completely normal. My home is in Fl but travel in my motor home, climb mountains and I am very active.

Don’t stop living just because you have a tube. Remember, It is only a problem if you make it a problem!
 

grantst44

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Joined
Oct 1, 2008
Messages
23
Reason
Loved one DX
Country
US
State
VA
City
Chesapeake
Hi running

I'm kind of new here too but want to thank you for your information. It's very helpful to me because my husband is 62 and having problems swallowing. He's lost a lot of weight (see my other messages). I mentioned a PEG to him but got no response. I also noticed people on here saying the C-PAP machine really helps as far as helping patient to get more rest.
Anyone can respond to my messages because the more info I get, the better I feel and I pass the info onto my husband. If I can help anyone, please feel free to ask me anything. I appreciate all of you very much.
Karen
 

CindyM

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Sep 17, 2006
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Learn about ALS
Country
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New England
City
Anytown
Just a little hint about the C-Pap. Most PALS find a Bi-Pap works better. The C-Pap will get air into you but the Bi-Pap also gets it out.
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
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Smiths Falls
Now that I did not know. Tammy is on Bi-Pap. How does the "getting the air out" work?
Mark
 

CindyM

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I'm not entirely sure, Mark. I only know the CPAP forces air in, but PALS often have trouble getting it all out. A Pi-Pap adjusts for this. Wikipedia says
VPAP or BiPAP (Variable/Bilevel Positive Airway Pressure) provides two levels of pressure: Inspiratory Positive Airway Pressure (IPAP) and a lower Expiratory Positive Airway Pressure (EPAP) for easier exhalation.
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
Thanks Cindy, I'll go google and see what I can find out. They just increased the pressure on Tammy's last week..just slightly. Boy I hope she continues like this. Coming up to 4 years from 1st symptom on Bulbar onset! Very slow progression! Knock on wood, I don't want to jinx anything.
mark
 
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