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Posted by mymisfit on December 29, 2005 at 20:13:58:Update time. First I want to explain that the tracheostomy I had is not one of the common ones with an inner metal or plastic tube, etc. It is called a tube-free trach (or flap-trach, or skin-lined trach). What my ENT did was graft the skin to my trachea, making a hole in my neck, creating a skin-lined stoma. There will be no caps, no plastic or metal tubes, etc. I can talk by occluding with my thumb, and also by putting my chin over the hole (though this tires the back of my neck). Eventually I will be able to talk by using neck muscles to close the stoma when I talk, at least that is the goal and a good percentage of patients are able to do this. We are uncertain about me due to the fibromyalgia making my muscles more "floppy" than normal.
We decided on this type of trach because my immune system is so compromised and there is evidence that it is less invasive and there are less infections. This has been true for me. I've not had any infection at all and the bleeding stopped within 5 days of surgery. We have not had to install any wall support tubes, etc. I was unable to talk for the first 23 days after surgery due to not wanting to put pressure against the stoma for ENT's fear of the wall collapsing inward.
For the first three weeks I had a persistent tickle and cough that kept me awake at night. It wasn't until about 10 days ago that I found out this was due to lack of humidification at night and that my lungs were drying out causing the cough. Since installing a portable warm air humidifier in the bedroom and another that goes room to room with me, I have been able to sleep through the night. I am starting to get real energy back, and as previously mentioned in another post, have been driving locally for almost 2 weeks, the first time since July, 2005. I am much more present mentally, though my retention is still low and Dr. P at Stanford wasn't sure if that would come back fully or not, time will tell.
This trachesotomy happened rather fast and was not done by the Stanford staff. I was not informed on some of the after affects of life with a trach. I, for example, did not know that there would be secretions to the extent there have been. I was not aware that I would need a good humidfying system to keep my lungs moist, and that this would help slow the amount of secretions.
My ENT is a good surgeon, but did not give me information post surgery that would have made my life a bit easier these past few weeks. I've had to locate suppliers on my own and did not know what I needed in the way of filters, covers, shower guards, etc. I was out in limbo. I almost drowned myself the first time I attempted a shower.
It wasn't until this week that I found a supportive website for tracheostomies like mine and it is on a site for those who have had a laryngectomy. It seems that a lot of surgeries for voice box removal are also skin grafts to the trachea and they have been able to answer my questions. I had tried another group but had no positive feedback or support.
I have had many good days and many challenging days. Each day is getting better as I gather more information and am feeling less self-conscious. My voice is almost identical to pre-trach, except I am still learning to breathe and talk so sometimes I sound like a tire deflating when I finish a word or sentence. I still wake up not remembering I can't talk without using my thumb or chin, but this will change over time.
I have had some incidents where I allowed someone's ignorance to hurt my feelings and I am getting tougher. I am fortunate to live in a small community where many know me and have been very supportive.
The most important thing to mention is I am glad I had this, even with the challenges. My body feels like it is healing, where in the weeks before the surgery I could literally feel my life slipping away, both in body and in mental capacity. I am starting to get my "perky" back, along with my sense of humor.
On the humorous side I still tend to cover my mouth when sneezing or coughing, even though I am sneezing and coughing from my neck and if I don't "cover up" it can be a nasty surprise to those around me, and embarassing for me.
I hope to hear from you. I thank you for your continued support. -- deedee
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