TRACHEA question

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Jul 22, 2008
Do a lot of MND patients have trachea's?

I've just started working with a lady who has had MND for two and a half years, 18 mths ago she got a severe chest infection and went on a bipap machine , she also has a trachea and a peg.

I am assuming that you mean a tracheostomy. If that is your question then the answer is not going to be encouraging as very few PALS go this route , about 5 percent do. But I do see this slowly changing as more and more people are starting to realize there is quality of life with a tracheostomy and vent. It is such a better way to go than trying to use a BiPap. I got one on July 9th and it went really smoothly! The trick is to get one before it becomes an emergency, I know too many PALS who kept putting it off until they found themselves in the emergency room. The road to recovery becomes long and hard and they are not prepared to look after themselves at home. They will not let you out of the hospital until you can prove you have qualified trained help at home. This can take awhile.
I chose to have it done and my whole family attended a two day training class on the care of the tracheostomy and vent. It covered everything from cleaning the stoma to suctioning secretions to care of the equipment. I was in the hospital for less than a week. If these things are not in place you can be prepared for a stay of six weeks or more! It is not a big deal if you plan for it and have it done when you are healthy I was talking and eating after only 18 hours after the surgery. It is so nice not having to struggle to breathe! Sorry if I got long winded and did not answer your question.
All the best!
Thanks Joel. I was wondering how you were doing.

This is good news, Joel. I, too, am glad to see one of your posts. Thanks for sharing. Cindy
Thanks Al and Cindy. It's good to be back. Things were a little busy for awhile.
thanks joel ... that answered my question perfectly

Dear Joel

Can you still use your voice after this procedure?
Hi Patty, yes I can still use my voice. It was less than 18 hours after the surgery when my wife, son, and daughter-in-law came to see me in the hospital and when they came through the door I said "Here is my family" and they were surprised. I have been talking ever since and lots of people are surprised at how well I can talk. I also got my appetite back and now enjoy steaks and every type of food again! I don't choke anymore.

I know I am VERY fortunate.

But I believe this is a benefit of planning for, and getting, a tracheostomy before it becomes an emergency.
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