Living with a Tracheostomy

[Shay522]

Is there anyone living with a tracheostomy?  I have trach due to bilateral vocal chord paralysis when they removed cancer and my thyroid a year and a half ago. I have had the trach since August of 2008.  I want to connect with others living with a tracheostomy

Thanks-

Shay

[ill13632]

I am on oxygen and resmed asv at night and am going to get a trach because it doesn't work.  I'm exhausted and the brain damage was so bad at one point I couldn't read/remember a single sentence.  Is a trach easy to live with?  the surgeon who has done 100s of trachs said he would nick the thyroid isthmus?
I heard it's better to get a larger trach depending on your sex and body size- I think I want a 15mm at least

I'm still exhausted and have headaches and nausea from GERD too, God it is awful

[cusar2]

I, too, am on oxygen and a bipap at  night...getting a trache to use for sleeping instead of using the bipap because bipap isn't cutting it for my apnea.  How do you use your O2 with the trache?

[arethakafele]

i have had severe COPD since 2007 and was put on a ventilator for 9 months and had my trach decannulated and peg tube removed.  Over time i continued on 02 and last year was put on BiPap for elevated C02 levels.  Recently i went to the hospital for lower leg edema (CHF) and IV Lasix and an x-ray showed tracheal stenosis that they told me required another tracheostomy.  i was devastated to think of going thru this again, but i was told i had to have it done to live.  i've been home for a week and i'm a nervous wreck, i have a ton of secretions and am constantly in fear of choking. i desat down to the 70's sometimes just going a few steps, so i mostly sit as still as possible.  i sleep on a ventilator in an effort to rest my lungs and help my heart.  i'm relatively young (51) and a former smoker.  Any words of encouragement would be greatly appreciated.

[gevalt]

Hello, josiegrl,
I read your post with interest as my son is now in intensive care on an oscillator/ventilator.  He's in critical condition; we don't know if he'll pull through.  Like you, he was on oxygen and a bi-pap before this happened, as his lungs are in very bad condition.  His heart stopped from too much pressure on it from the poor lung condition.  If he pulls through this, the doctors think he'll have a tracheostomy.  I'm wondering if that means he'll always be hooked up to a ventilator-type contraption at home.  Do you use the trach in addition to the oxygen and bi-pap or instead of them?

Thank you for commenting.  My son is 33 years old.  Feel free to contact me directly at ***@****
Barbara

[hoarsewhisperer]

Hi Shay522! I am considering the trach for the EXACT same reason you have yours. Bilat damage is very rare and I have been trying to make due with a 2cm airway for over 2 years now. I used to be a runner and now I can barely endure any physical activity. Johns Hopkins doctor recommended a trach but I've got so many questions! Are you planning to get the laser cordotomy surgery later on? The trach is the first step and due to my small airway I think it will be permanent. Can I contact you via email? I've got a long list of questions and would be so grateful for your insight and experience.

[josiegrl]

I have had a trach for 4 years.  I have subglottal stenosis due to an abcess in my throat.  I am also on oxygen and use a bipap at night.  I am 42, and though it is not easy in time you do adapt.  I agree it would be nice to talk to others that have a trach and can discuss issues with since most people don't understand.  I wonder sometimes how much doctors really consider what its like to have a trach on a day-today basis.  

[Charlestrahan]

Hi sorry to hear about your trash. But I had a tracheotomy for over 52 years. I had pneumonia at 17 and could not breath, so a tracheotomy was placed. In the process the doctors damage my nerves to my vocal cords and they became paralyzed. I had my trash plugged up during my college days and in 1994 26 years after had reconstruction surgery to remove it. But 4 years after had to use oxygen until 2008 when I open y trash back again. Now I am with a Moore trash with is a tubby trash because the reconstruction surgery scrape the rings out of my larynx to get the scare tissue out. I now use a Bypack machine at night only.

[gran2five]

hi how do you keep humidified i am always so dry,and how do you shower with out drowning lol,i sit in half bath of .water. gran2five

[Charlestrahan]

You should used a heated humidifier you can buy a Walgreen or Walmart

[gran2five]

hi i have had a trachi since october 2007,iwas left with scar tissue after being in intensive care with pnumonia they used a tube to big for me,so had to have trach put in to bypass scar tissue, it would be nice to talk to some one else with a trachi.
                                linda

[Sunny602]

Yes, I do! I have it because I am fairly vent dependent due to diaphragmatic weakness. I have had mine since 2004 and have learned to adapt to it, including how to shower without getting any water in it! It was very hard at first, I didn't think that I would ever get used to it due to the irritation and coughing that it produced. But, over time I did.
If you have any questions or just want to share, please PM me.
Sunny :)