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am i the only one?

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

am i the only one here who has a permanent trake?  If anyone else has one, I'd love to know how you deal with it on a daily basis.  How long have you had it, do you still cough a lot with it, do you have trouble breathing thru it at times?  If you know of any tricks to dealing with a trake i'd appreciate the info.  Do you have a prostesis, do you have problems talking with it?  Do you have problems with the stickies coming loose?  Thank you in advance.

God Bless you all,

debbiejeanne

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I wonder if Roxanne Jacobs has one.  She was Silver Fox here.  She posts a lot on FB - she's in the middle of chemo for a new round in the fight.  She started with Laryngeal cancer, I believe.  She's one of my FB friends.  I am Pamela Suzette Mullins there.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

thanks pam.  i sent her a friend request.  I couldn't find u on facebook.  I could only find a pamela suzette montgomery.

God Bless you.

debbiejeanne

Ladylacy
Posts: 514
Joined: Apr 2012

When you say permanent trake do you mean you have had a laryngectomy?  (There is a difference between a trake and a stoma and I have had to explain that to the nurses when my husband was in the hospital.  They thought he could still breathe thru his mouth and nose and with a stoma you only breathe thru that.)  My husband had a larynectomy two years ago after having a temporary trake for one month.  He now breathes thru a stoma (hole) in his neck.  He uses a lary tube the majority of time to hold his HME in place.  He feels more comfortable with the tube and HME than a baseplate and HME because he started having trouble with the baseplates not sticking and mucus getting under them.  He has no trouble with coughing other than when he takes the tube out to clean it and then puts it back in.  

If you are having trouble breathing thru it are you keeping it cleaned out?  My husband has a lot of mucus and that can clog up and he cleans his tube twice daily and still uses his suction machine.  If you are coughing a lot with it, then you may need a shorter tube.  He does not have a TEP for talking.  He was going to get one last April but instead was diagnosed with cancer at the cervical of his esophagus and underwent another 35 radiation and 7 chemo treatments which only kept him NED for 4 months.  He uses a TruTone EL to speak with.  

Sharon

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Sharon thank you so much for replying.  I have a stoma and breath only thru that.  I had a larynectomy Feb a yr ago.  I do clean the leary tube but not twice a day.  Perhaps i will need to start.  What is a Tru Tone?  I'm sorry to hear your husbands bad news and will pray he gets and stays cancer free.  Thanks again for sharing your info.

God Bless you and your husband,

debbiejeanne

 

Ladylacy
Posts: 514
Joined: Apr 2012

TruTone is the brand of electric larynx that my husband uses to speak with.  He holds it under his neck to speak and before the swelling went down he had a tube that he put on the end and put in his mouth to speak with.  My husband always cleans out his lary tube in the morning and at night but he also uses the suction machine during the day to clean it out.  His mucus is very bad and had to clear up a lot before the second round of radiation. 

Sharon

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

thank u sharon.

God bless.

debbiejeanne

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I am a total laryngectomy since Nov 2011. I have a TEP Prosthesis but do not use it. I use esophageal speech to some intermediate level and suppliment with an  electro larynx. I wish the TEP was never made, because I now have lung and bone cancer and don't need the extra hassle of the TEP. The TEP may be a good solution for those whose laryngectomy "cured" their cancer but in my opinion not such a good solution when the operation could not get all of the tumor.

I will write more about my experiences/. Rick.

debbiejeanne's picture
debbiejeanne
Posts: 2590
Joined: Jan 2010

Rick, thank you for replying.  i'm sorry to hear about the cancer and you will be in my prayers as everyone on here is. 

God Bless

debbiejeanne

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