Download A Young Man`s Voice

A Young Man's Voice (Experience with a Tracheotomy)
Reprinted in part with permission from the Muscular Dystrophy Family Organization
A Young Man's Voice (Experience with a Tracheotomy)
Reprinted in part with permission from the Muscular Dystrophy Family Organization Summer 2000
"The Foundation Flyer"
My name is David. I am 29 years old and have a neuromuscular disease. Almost three years ago my ability to
breathe without assistance had diminished to the point where I needed a tracheotomy. At the same time that the
doctors inserted the trach they also inserted a feeding tube. I’m not sure of your exact circumstances, but I’m going to
relate to you my experiences. Keep in mind your results may vary somewhat. I’ll begin with the tracheotomy.
I was very reluctant to get the tracheotomy but the alternative was not a good option. If you decide on getting the
trach, many things will be different. I would suggest that you have your doctor determine the size of your trachea
before surgery. My trachea was smaller than expected which caused some postoperative problems. The doctors
thought I would only be on the ventilator at night. But my trachea was unusually small which meant I needed 24-hour
ventilator assistance. It’s my understanding the larger the trachea the better.
Right after you get the trach, there will be some pain or discomfort but you will be given medication to help ease any
pain. The trach will be attached with sutures for approximately two weeks. The sutures help secure the trach while
the trachea heals. When the sutures were removed there was very minimal pain. Afterwards, the trach will be
secured with a collar, which goes around your neck.
Any trauma to the trachea causes secretions to drain in to your lungs. The method to remove the secretions is
suctioning. This is done by inserting a catheter through your trach and suctioning the secretions out. This sounded
pretty scary to me but it’s virtually painless if done properly. In fact, you feel much better after the fact. Actually , the
only pain caused by suctioning is too much movement at the trach site or if the catheter goes too deep and hits the
stoma. Again, if the person doing the suctioning does it properly, it’s painless.
The amount of suctioning needed can vary greatly day to day. Some days I can go a few hours without needing to be
suctioned. Then some days I need suctioning hourly. I need to be suctioned the most right after I go to bed and right
after I get out of bed. The drastic change in position from lying down to sitting upright causes secretions to drain.
The trach site will have to be cleaned very well every day. I have my trach site cleaned right after I go to bed and right
before I get up. Right after surgery, trach care causes some discomfort but it’s virtually painless when the trachea
fully heals. The trach site is cleaned using a mixture of sterile water and hydrogen peroxide. The mixture is placed on
a piece of gauze and/or q-tip and then used to remove any drainage that may have collected at the trach site. Trach
care won’t eliminate infections but it really helps. You will get an occasional infection but a round of antibiotics will
help kill the infection. As time has gone by infections have become much less frequent. The signs of an infection are
elevated temperature, soreness at the trach site and colored secretions. A specimen of your secretions can
determine what infection has developed.
Your trach will need to be replaced about every month. Changing the trach is the worst part of the routine. There is
pain involved especially the first few times. Right before my trach is changed I take some pain medication to help
prevent as much pain as possible. Depending on how tight the trach fits into the trachea determines how much pain
is involved. My trach is a tight fit. Your trachea may not be as small. So your trach changes may be easier. Right after
a trach change you will probably bleed a little at the trach site and you may even cough up some blood. Any bleeding
usually stops after 24 hours. Again, trach changes get much easier as time passes. For example, my trach was
changed Monday with very little pain. Usually your trach can be changed at home by a doctor or nurse. Only my very
first trach change was done at the hospital.
Also, technology is constantly getting better. Your ventilator will attach to a wheelchair. You can practically go any
where. The ventilator has an external battery, which will last 12 hours before needing to be charged. If the battery
runs down, you plug the ventilator into any normal household outlet while the battery recharges. I don’t leave the
house much but I am able to go practically anywhere. It’s my decision to stay at home. I keep busy watching movies
and working at my computer. Now I’ll move onto the feeding tube placed at the same time as the trach.
The trach itself can impair your ability to swallow. After the surgery they can do a test to see if you can swallow
without aspirating. Aspiration is where fluid or food enters your lungs which can cause pneumonia. I had a very hard
time when it came to never eating again. About two months after getting the trach, I developed pneumonia. The
pneumonia was probably caused by aspirating on food. It’s still rough but I haven’t eaten anything orally in over a
year. The ability not to be tempted to eat is mostly mental. I make an effort to block out the urge to eat. The feeding
tube is relatively painless. The most important thing is after every feeding to flush the tube very well. Even with
thorough flushing, the tube may become clogged. This means a trip to the hospital as an outpatient to get the tube
changed. Getting the feeding tube changed isn’t too bad. I’ve probably had my feeding tube changed seven times.
Only once was there a lot of pain and that was a fluke. The doctor who arranged it screwed up but you shouldn’t have
to worry about that .
There are two options when choosing a feeding tube. There is a G-tube or a GJ-tube. The G-tube goes directly into
your stomach. The GJ-tube bypasses the stomach and goes directly to your intestine. The advantage of a GJ-tube is
that it greatly reduces your chances of aspirating on your stomach contents. Since the GJ-tube bypasses your
stomach, there isn’t any food in your stomach, which can be aspirated by reflux. The only disadvantage of a GJ-tube
is some-thing called “dumping syndrome.” Dumping syndrome can cause fainting, sweating, rapid heartbeat and
flushing of the skin. If you develop dumping syndrome you will handle these symptoms much better as time passes. I
would personally suggest the GJ-tube but you should ask your doctor which tube would suit you best.
Well, I think I have covered all of the bases. The first month will be pretty bad. This is a major decision to make. I
became very depressed afterwards but I slowly adjusted. Your life will be drastically different. The doctors can give
you medication to help alleviate any depression. Right after the surgery is scary. There will be many machines and
alarms going off. You’ll probably panic at times. People will tell you to relax and stay calm. It’s easy for them to say
but they are right. Eventually, you will cope. You can expect to be in the hospital 2-4 weeks after the surgery.
Keep in mind your results may vary. I related my personal experiences. The most important thing is that this is your
decision and no one else’s. You will lose some quality of life but you will gain quantity of life. I can tell you that I
wouldn’t be here to send you this letter without having the tracheotomy.