Posted by Marie on February 27, 2012 at 00:08:21:In Reply to: Re: My MMA Experience posted by often_awake on February 23, 2012 at 13:22:06:
Sure, I don't mind talking about it. The
tracheostomy is considered permanent but can be
reversed although it is difficult to do so per my
surgeon. It is not the tube free or skin lined
trach which I wish I had done at the Cleveland
Clinic but was too debilitated to make the trip.
The surgery itself wasn't too painful. The pain
lasted about 2 days but was controlled by pain
medication. I had a very sore neck and major
headaches. I was in the hospital about 4 days.
The hardest part was immediately after the surgery
my lungs filled up with mucus and I had to be
sunctioned out every 4 hours. Basically a rubber
catheter attached to a sunction device was strung
down my stoma to sunction any mucuous secretions
directly from my trachea. It was very
uncomfortable at first and they gave me my own
portable device but after 2 months the secretions
decreased now I don't have to sunction anymore. I
was sent home with a size 6 shiley tube which was
like breathing through a straw and it would
constantly get plugged with mucuous so I had to
clean it often. I also coughed A LOT almost to the
point like I cracked a rib or something. I had a
nasty skin infection which was treated with
antibiotics. For the first month I was practically
bedridden and my sleep really sucked because the
trach tube was so difficult to breath through and
impeded my daytime breathing as well. Also, I had
to keep my room humidified and heated so it felt
like a rainforest. I couldn't go outside even
with an HME device attached to my trach tube so my
lungs dried out. To my surprise, my sleep did
not improve immediately. The first couple of
nights in the hospital went really good and I woke
up with a cool, calm feeling but after that it was
all downhill. My sleep was really fragmented and
often I had to take naps throughout the day. I
also had severe fatigue and a constant hungover
feeling. I was dreaming more frequently though. 2
months post surgery I had the trach tube taken out
and now I'm fitted with a Hood Stoma Stent curved
that's working out really well. I keep it plugged
during the daytime and open at night. I clean it
morning and night with hydrogen peroxide - it only
takes 5 minuts. My speech is normal. Now I am 3
months post surgery and am feeling a gradual
increase in energy. My sleep quality has
definitely improved but my patterns are really
erratic i.e. insomnia, awakenings etc. I think my
body is re-learning how to sleep. I've read other
people's experience on this board and they've all
said it took up to a year until their sleep
normalized so I'm trying to be patient. Overall,
the experience is more difficult than the MMA
surgery but has been worth it.