with a Trach
by: Margaret ďMJĒ Purk
Just to introduce myself, my name is Margaret Purk, but most people
call me MJ. Iím 20 years old and am a junior at Wright State
University, majoring in Rehabilitation Services. I carry a full load
of classes, usually 16 to 18 hours a quarter. I have Spinal Muscular
Atrophy, SMA, type I+. The plus basically means that I fit neither
the type I category nor the type II category because I have
maintained many abilities lost by type Iís and never achieved some
of the abilities type IIís have. (picture 1)
For the last 13 years I have used Noninvasive
ventilation (NIV) and enjoyed an amazing quality of life. I started
using NIV at age 8 because of significant CO2 retention
and under oxygenation. For the first year I used a BiPAP machine and
while the Respiratory Therapist said that it would take awhile for
me to adjust, I took to it immediately. After my spinal fusion at
age 9, I needed more support so I switched to a volume ventilator to
support my nighttime, and eventually daytime, ventilatory needs.
Since 11 years ago my breathing has been changing and
unfortunately, not for the better
Due to repeated
intubations during my high school years, my epiglottis was
breathing to become increasingly
difficult. My breathing ďspaceĒ in my lungs has become
increasingly smaller over the years, leaving
me with, what one of my doctors refers to
In January of 2008, I developed the flu which
ultimately led to my 3rd hospitalization due to illness.
I recovered from the flu in about two weeks and then developed a
stomach virus which led to more than 36 hours straight of vomiting.
After I finally recovered from both the flu and the stomach virus, I
was finally able to get up in my wheelchair, with hopes of returning
home and to school. Unfortunately, this course of action was not to
be, at least not for me. (picture 3)
Every time I would get up in my wheelchair, I quit
breathing after 20 minutes. The first time my heart rate also
dropped but that didnít occur again. I had several subsequent
episodes of breathing stoppage and they would only occur in my
wheelchair. After the initial 20 minutes, my nurse would use the
Cough Assist to open my airway again. My airway would repeatedly
collapse in 10 minute intervals after the initial 20 minutes sitting
up in my chair. After several days of tests; ranging from an EEG to
an IPV treatment to a nasal trumpet, it was decided that something
needed to be done on a more permanent basis. After many weeks and
stomach complications, I was released home with my trach.
My trach took some getting used to but I am now 4
months out and I have to say that I wish I would have gotten one
sooner. Despite a persistent infection, Iím doing great with my
trach. I still attend college full-time, with my nurse, Brenda. I
have noticed a variety of pros and cons when comparing NIV to trach.
The pros, in my opinion and experience, outweigh the
cons but I must confess that I am very new to the world of trachs so
I canít say for certain that I wonít find more cons along the way.
One of the biggest benefits for me is that I no longer have to be
actively trying to breathe. Prior to my trach I used a mouthpiece
during the day, which required me to be attentive to my breathing.
Like many young adults, I donít always do as I should so remembering
to use my vent was a bone of contention between myself and my
medical team. I also no longer get what many people refer to as
BiPAP bites or pressure sores from the mask. My face is ďnakedĒ all
the time now. Another smaller very shallow benefit is that people
donít seem to notice my trach as much as they did my mouthpiece set
up. I wasnít hugely self conscious about that but occasionally it
would bother me. The greatest benefit I have found thus far is the
trach in combination with the Cough Assist. I find it a great deal
easier to get plugs out now. Plugs that used to take two to three
hours to get out, now take a maximum of fifteen minutes to clear.
The cons really depend on a few things; 1) who is
caring for the trached individual, 2) how well the trached
individual and caretaker adjust to the trach and 3) the lifestyle
that both the trached individual and caretaker were accustomed to
prior to the trach. For me, Brenda is, was, and will continue to be
my primary caretaker so we both adjusted together. When we attempted
to add other individuals into my daily care routine, it didnít work
out so well. My father also did well with trach care and caring for
me, despite not being my primary caregiver for many years now. As I
said before, I adjusted well to my trach, minus a persistent
infection I acquired in the hospital. The infection, pseudomonas, is
quite common for people with trachs. I was so darn lucky that I had
this infection three times prior to getting my trach. My lifestyle
hasnít changed too much but enough so that I can tell a difference.
I require a great deal more suctioning than I did before but that
could be due to my infection. I am more ďattachedĒ to Brenda because
of this and, right now, canít go running off on my own. I donít mind
that as much as I thought I would; Brenda gives me my space and I
donít miss out on anything because of my trach.
I am still a big supporter of NIV despite now using a
trach. NIV got me through some very hard years and I owe my life to
it. Do I wish I could go back in time and have been trached sooner?
Sometimes, but there are always things everyone wishes they could
change. I truly believe that it is a huge success that I made it 20
years before needing a trach. Ultimately, each person or family must
decide on the path that works best for them. Iím just one person who
has lived with NIV and now trach. My experiences with both are
unique to me, I had hoped Iíd never need one but I will never regret
any of the medical choices I have made.