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do u have a permanent trake

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

do u have a perm trake?  if so, how long have u had it?  do u still cough a lot?  have u had any complications?  what problems do u have with it?  any info will be appreciated.

on another note, if someone reading this knows chefdaddy, can u please give me an update on his status.  i haven't been on here for over a year so i'm out of the loop.  thanks a lot.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I do not have a trach but I'm sure someone will be along soon to answer all of your questions. Good luck to you :-)
Billie

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

thank u billie!

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

i do have a trach, have had for 4 1/2 years. i don't call it permanet but more than likely will have it the rest of my life. 

I cough some  depending on time of year and if i have a cold. i have had no real complications of a serious note. the problems would be soreness around the trach from time to time, but i use some diaper rash stuff and it goes away fast. 

after i got it, right away i felt a huge bennift to my lungs as it was getting more air. 

why do you ask?

feel free to ask any questions. 

john 

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

because i still cough a lot and have to suction about every 10-15 min.  my skin is reallly dry and feels like sand paper, literally.  i hate this damn trake and wish a 1000 times i would have not had it done.  i'm thinking there may have been other solutions.  i just don't know.  thanks for your reply.

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

have you tried the Johnson's baby lotion or Aveeno Baby soothing relief diaper rash cream. it sure helped me the dry and soreness. The nurse told me to try and doc confirmed. 

do you have the trach with the hole in the dube on the bend or one without. i had the hole for 3 years and another doc told me to try the one without the hole and that did help with some of dryness problem. 

I had no choice in the matter actually. how is it that you had a choice?

I can't say as i hate mine, but i could understandy anyone feeling that way. seems like so long ago that i got mine i probably felt the same way in the begging. 

prayers you find a way to deal with your problems. 

john 

 

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

john, i didn't have a choice, i wish i had been given a choice.  i have the leary tube with a bend in it.  i'm not sure i understand what you're saying about the tube.  i've been using aqua4 on my dry skin but will try your recomendation as well.  nothing can hurt at this point.

thank you for replying.

God Bless,

Debbie

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

It HAS been a while.  Hope you and yours are doing well.

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

tahnk you Pam, yes it has been quite a while.  i hope you and yours are doing fine as well.

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

tahnk you Pam, yes it has been quite a while.  i hope you and yours are doing fine as well.

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Hi, I have had a trache for about 5 months and find it annoying. Phlegm always seems to be part of the picture, this comes and goes at varying degrees. With regards to soreness around tube I use antibiotic cream (the oily type) which helps healing from radiation and keeps away the dried mucus. I am hoping to lose the trach eventually as my chemo treatment hasn't finished but have just finished radiation, still have swelling around larynx and have to wait for that to go down. If all goes well I can keep my larynx but will have to have it removed if things don't go well. I can see me having the tarch for a while yet. I keep 5 inner canulars and clean them in a mix of peroxide and distilled water rinsing with distilled water after, that way I don't have to replace them so much. Cant think of anything else yet.

Michael

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

thank you for your reply.  I will pray you don't have to keep your trake.  I will pray for you to heal and get welll soon.  God blesss you.

patricke's picture
patricke
Posts: 494
Joined: Aug 2006

Hey Debbiejeanne, I am a trachee fast approaching 2 years (in June), and it is most assuridly permanent; oh the joy of it all.  I still cough some, but not alot; I do hate it when a cough catches me at inopportuen times, such as when I'm driving, but I can live with that.  Over time, as I have healed and, I guess, my body has adjusted, my trach has become much easier to live with, in that, I no longer have to wear a tube (yeaaaaaa!), as my stoma has a stable diameter; the mucus volume has diminished greatly and; I stopped having to suction ages ago (one of my least favorite activities).  The body adjustment occurrs incrementally and impercepibly over time, but it does happen, which you will periodicly become aware of, much to your delight, well.  I haven't had any complications or problems with it, I'm happy to say.  I am also a laryngectomee, but that is another issue.  I cover and protect my stoma with a bandana, yes, I am a cowboy, whooopee kai yea little dooogies, which I prefer over the adhesive Heat and Moisture Exchange devices that I have used.  And another yes, I am a fashioneeeesta, as I have a variety of bandanas that I wear, which are all not at all coordinated with the t shirts and cargo pants which I usually sport.  Let me know if you have any specific, or general questions, and I will be happy to respond.  It is annoying being a trachee, but as in all things beast aftermath related, it's all about adjusting to a new normal.  So, here's to keepin it movin forward!

PATRICK   

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

But I do have a trach.  Mine is a Montgomery.  It's a very soft, pliable kind that goes straight in and fits flush with the trachea wall.  I fasten a small gauze pad on the end with a rubber band to keep any mucous accidents from happening.  I have a very strong cough so I don't need to be suctioned.  All the garbage just comes out.  I have found in the winter time, even with the gauze over the opening, things dry out quickly.  I find myself having to go in the stoma with a very thin pair of forceps and pulling a buildup of dryed mucous from the back wall of the trachea.  I have two tubes that I alternate with and get replaced every six months.  You're not supposed to have to pull it out except once a week to clean but with MY mucous production, I find I need to clean it more frequently.  The Montgomery is much more comfortable than the Shiley.  If I can ever get rid of the fibrosis and lymphedema in my neck, hopefully I'll be able to take it out for good.

Greg53's picture
Greg53
Posts: 837
Joined: Apr 2010

Hey there Debbie!

No advice on a trach – just wanted to say Hi! 

Sorry about your current issues.  Hope you’re doing well otherwise!!

My best to you

Greg

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

greg, thanks for saying hi, it was nice to hear from an old friend.  i've been off here for quire some time so i'm really out of the loop.  Take caare and i look forwrd to more posts in the future.

God Bless

debbiejeanne

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

i hope it is not permanent for you also.  i am a laryngectomee which is y mine is permanent.  i breathe thru my stoma and not my mouth and nose.  I dont know what kind of leary tube i have, didn't really know there we differeent kinds.  thank you for replying.

God bless,

debbiejeanne

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

Patrick, thank you for the info.  I am also a laryngectomee.  Mine just turned a yr old.  I still cough a lot and have to suction quite a bit which i hate.  i could probably deal with this if it weren't for that.  I never leave my house b/c i always need to suction and i hate taking the machine with me.  i have no life and haven't since the laryngectomee b/c of the suctioning.  it's just easier to stay home.  i prrefer to be alone also.  i dont enjoy getting company b/c i can't talk and company seems senseless if we can't even talk.  i really hate my life right now and sometimes feel like giving up but i know i can't because of those who love me.  Then I have times I am thankful to be alive and tell myself to accept the new norm.  i don't know, i just get upset sometimes.  anyway, thank you for sharing your story, it gives me someething to look forward to.  God bless  you.

debbiejeanne

Chuckles0504
Posts: 20
Joined: Dec 2012

I  have  had my trach now for three months.  I was told it would be removed after my surgery (glossectomy and radical neck  dissection)   I am so discouragedthat I still have it.  I think if they pulled it, I might feel that my recovery was progressing.  It has been three months since my surgery and was told I would be back to normal in 3 - 4 weeks.  now three months later I cannot do anything.   If I had known this, I would have never done this surgery.  Very depressed and discouraged!!

 

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2859
Joined: Jan 2010

I definitely understand the depression and being discouraged.  At least your trake isn't permanent.  Mine is and I hate it more everyday.  I had it a year 2/28 and still cant come to grips with it.  It depresses me everyday and if i had it to do over, I WOULDN'T DO IT.  The doctors never told me all the side effects that come with a trake/larengectomee.  YOu can't smell, sniff, blow your nose,  blow out a candle, eat much (cause food doesn't taste right).  Some days are harder than others.  Some days I cough more than other days and those are the days that are so hard. 

Thank you for replying and I pray that you get your trake out very soon.  Until then, try not to get to down.  Find comfort knowing that it will come out soon and it is not permanent.

God bless,

debbiejeanne

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