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Do you have difficulty eating or drinking?
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Thank you for the information Elizabeth. I definitely need to look into getting a cough assist machine and suction device. They sound like they would be very helpful in the control of my mucus and breathing problems.
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I’ve had PEG for around 4 to 5 years now, but never have had to use it for nutrition. I only maintain it, which is easy. I rarely know it’s there. I did based on my Neuro’s suggestion, since breathing can drop suddenly, and GI won’t do the procedure. It really wasn’t a big deal. I have the button type that fits closely. I was out like a light when they gave the Fentanil and another drug. Woke with no side effects. Stayed overnight in the hospital. Good experience considering.
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I have to rely on my peg feeding tube completely now for all my nutrition since I am unable to swallow food or water without choking or aspiration. Not only the swallowing process is a problem, but my mouth and tongue do not work very well. I have very little control of my mouth or lips. If I try to place food or water in my mouth it comes right back out all over my clothes and the floor or furniture. I have a problem with constant drooling of saliva from my mouth all over my clothes and the floor. I have no control over my saliva.
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Walter,
I take one Nuedexta daily in the afternoon around 3 pm which has dramatically helped my saliva problem. I am very sorry you have these problems to that extent. I eat from a deep large plastic bowl and hold it close to me so it can catch anything. Have your Neurologist or any health worker tried to help you with ideas of how to perhaps manage things a little better?
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Has anyone experienced taste changes? Sour and bitter are VERY exaggerated. It is so strong that I cannot eat fruit, yogurt, or juices.
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The doctors advised me that I should not attempt to swallow food or liquid by mouth anymore because of the risk of choking and aspiration pneumonia. They did a swallow test at the hospital in March when I had surgery to place the peg feeding tube in my stomach, and they said just about everything I swallowed was going into my airway and into my lungs.
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Yesterday morning I could barely taste anything, but usually I can taste everything. Occasionally I cannot.
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Walter,
Just follow your Doctor’s advice.
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Hello, Y’all: 7/14/20
I have a feeding tube and it is LITERALLY a LIFESAVER- wouldn’t be here w/out it! All nutrition/water via tube. My response to this subject is this, though: When my throat gets dry and I need to swallow a little water for relief I can get my head/chin in a certain position and while consciously swallowing (carefully) I hold my nose w/my fingers and I avoid choking. Only 1 swallow action, though, b/c if I try for 2 w/out releasing my nose my ears will, slightly, stop up. I am not able to swallow all the water but- enough for moistening.
Again, I know this discussion is for those eating by mouth but, maybe, this procedure I have learned for swallowing thin liquids and avoiding choking will be helpful to someone…
Thx RDR
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