Your thoughts on Tracheostomies, Vents & PEGS

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joelc

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I have been reading the struggles so many people are having and it breaks my heart!

As one who has endorsed technology and has a PEG and a Tracheostomy & Vent, I see the needless suffering people do. These devices are life savers and life enhancers and very easy to have done and deal with.

I realize, and respect, everyone's free will to choose them or not. I am not trying to upset anyone or convince anyone to change their minds, but I offer to answer any questions and misconceptions anyone might have about either getting one of these or life with one!

Please feel free to share your thoughts and ask questions.

I promise to be open and honest with my responses.

God Bless you ALL!
 

BethU

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Hi, Joel ... I have appreciated all the information you have provided on traches. I am not worried about a PEG, but have decided not to get a trach, because I will not have full-time family care when I reach that stage.

Because my speech is gone, and I will have to depend upon hired strangers to handle it all, it seems to me wise to not attempt it. But I'm sure that many who are in a position to deal with it will go ahead because of the insights you provided.
 

brooksea

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Joel,

Thanks! Forgive me if I cannot recollect whether you can speak or not.

My husband has the same concern that no one would be able to understand his needs if trached.

Can you still communicate using your own speech or mechanized?

My husband's hands are about gone, so typing will be out.

Thank you so much.
 

joelc

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BethU, thank you for your thoughts, please do me one favour and leave the option open to be able to change you mind later if your situation changes.
There are more and more options opening up all the time.

CJ, I am extremely fortunate in that I can still talk and eat. I have not used my PEG since getting my tracheostomy.
My swallowing got so much better after getting it and I have no explanation as to why.

But my hands are all but gone, I use a headmouse and a button for clicking. There are also laser eye devices that I am exploring because my days are numbered with the headmouse - my neck is getting too weak to use it.

There are all kinds of speech devices and if you can still move your eye you can communicate.
Since ALS does not affect a persons eyes there will always be a way to communicate.
 

caroliney

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Trach is not for everyone.

Hi All,

My experience with the PEG, was great. However, the trach, requires a little more thought and education by trained personnel. Not impossible, but more training, education, and medical needs have to be met. Do your research on the trach and vent.

Hugs and Prayers to my Fellow ALS friends,
Caroliney
 

jonsjr40

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Hi its johnny I have a peg for two years don't it don't miend it much i'll do what it takes to live as long as I can for my kids and my love Donna. I want to know more about a trach can any one till me what it like to have? Can you still travel? Do you have a hard time sleeping. I do that now I have to take sleeping pills every night.
GOD BLEES EVERY ONE
JOHNNY
 

joelc

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Jonny, there is a thread called "Sensitive question: ventilator or no vent?" - on page 2, close to the bottom, I share my experience getting a tracheostomy and vent.
If you continue to read that thread you will hear what my life is like with one.

Suffice it to say my life has improved significantly and it is not a big deal to have a trache. I can eat better, I have more energy, we travel more now and I sleep better and never have to take sleeping pills.

Life is GREAT!
 

baker5131

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trach,vent,pegs

My husband was diagnosed this april '08 and he said no to everything (trach, peg, bipap). As things are progressing quickly I hope he will change his mind. I know what a benefit these medical procedures are as I am also a pediatric nurse on a respiratory floor. So he would definitely not have to worry about someone knowing how to handle trach and G-tube care. I always think if these young children I take care of can handle having these life saving procedures without option of questioning pros and cons, can't we as adults at least consider them? Anyway I'm all for trachs,vents,pegs and taking care of them just takes practice but anyone can do it. :-D
 

Marjorie R. Wilcox

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Thank you for the encouragement as we are expecting the decision for these procedures to have to be made one day. Rick uses the Bipap faithfully overnight and often yawns during the day and needs a nap with it. I have been fighting with the pulmonologist about the fact that he skips several breaths at a time while sleeping. He may need a different kind of machine. We can't get in for another sleep study until January. We are thinking that he is fighting off aspiration pneumonia too because of all the morning congestion. He has to wait for a couple hours before he eats his breakfast. I am sure I can take care of his needs if he gets a peg or trach. If I could take care of his leg after the explosion injury, I can take care of anything! Besides, he is otherwise living a very busy and gratifying life. Most people don't know anything is wrong with him other than he walks a little funny. His diagnosed was a year ago.
 

ptich

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I read that vent support runs about $100K a year. Is that true ? Does insurance pay for it ?
 

joelc

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Anyone can take care of someone with a vent, contrary to what they want you to think it is easy! You just need a wiling person to agree to do it. Depending on your insurance you have a possiblity of help there. Even with help it will not cost $100.000.
 
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