My name is Mike Paul. I am 56 years old and was diagnosed with operable lung cancer in
March 1997. Specifically, I had non small cell carcinoma, Stage 111 with 5 or more tumors
surrounding the right bronchial passage within 2 cm of the tracheal branch. I agreed to an
extremely delicate yet aggressive procedure called a sleeve pneumonectomy. The left lung and
part of the trachea and bronchial tubes are severed and removed, and then the right lung
is reattached to a shortened trachea. This operation was pioneered by Dr. Peter Pairolero
of Mayo Clinic in Rochester MN. Although I am from the San Francisco area, I traveled
there for this operation since it appeared to be my only hope of surviving the cancer.
Within 36 hours after the operation I began to have adverse symptoms, and was diagnosed
as beginning ARDS. I was induced to coma, and did not regain consciousness for 26 days.
After the 19th day the doctors were convinced that I would not survive since I had been in
coma long enough to cause damage to my other vital organs, as well as suffering brain
damage from oxygen deprival. During coma I had heart flutter (afibrillation) to the extant
that the electric paddles were applied in order to stabilize my heart rate. I lost on
average more than 2 lbs per day on intravenous feeding. My heart rate was never less than
125 bpm and my blood pressure was dangerously high during the entire ordeal.
When I recovered I was in dreadful condition, having lost 30% of my body weight and
with other vital signs far outside the norms. I spent 3 weeks in ICU recovery at Mayo and
then was air evacuated to San Mateo, CA and continued hospital rehabilitation for another
5 weeks. Prior to returning to the San Francisco area, my life was a blurry dream world.
To this day I don't know what is reality and what were dreams. Dreams during coma were
fantastic, drug fueled, epic releases of pure ego, and are a subject of another day.
During this period I began to recover some physical and mental acuity, and I began to
search the Net for help from former ARDS patients that had endured what I was
experiencing, and was not able to find anything. What was even worse, I could get no help
from the professionals in whose care I was entrusted. This is not a complaint about the
level of medical care here. During the past 18 months I have become familiar with the
capability of several pulmonary care programs at Mayo and at Sequoia Hospital in Redwood
City, CA, and I have nothing but the utmost respect for these wonderful people. The fact
is, that as professionals they don't know where to turn to get information on support
groups unless they exist within their own hospital environment. Even if there had been
information concerning chat groups of ARDS survivors I would have been saved the effort of
having to design my own physical and mental recovery program. Actually, I had a lot of
help in recovery from the Sequoia Pulmonary Rehabilitation group run by Mrs. Gina Thomas,
but I was still the only person recovering from ARDS in their program for the past 18
months, all other patient being mostly emphysemic. I only met one other ARDS victim that
was a graduate during this time.
I began to make some conclusions after release from Sequoia in June 1997. One, that
there were not very many of us who live through this ordeal. Two, people my age who do
survive don't tend to be computer literate (I was in the computer business for 25 years),
and therefore don't start computer support groups. Three, without world wide coverage,
such as from the web, you will never get enough of us in one geographical location to form
a support group.
I continue to recover, but I have irreversible lung damage. There is severe scarring of
the remaining lung tissue, and I have reached a lung function capability of about 30%
fully 18 months after the operation. Most medical studies show that all ARDS patients
recover within 18 months, so I am where I am. Oddly enough, I am very healthy except for
the fact that I need at least 3 lpm of supplementary oxygen 24 hours/day. I am not
immobile, I can drive, travel (commercial air travel is problematic, but more on that
later), do limited work, and have good mental health concerning my condition. It would be
hard to say that a support group would have improved my ultimate outcome, but it sure
would have made better those dark days when I couldn't even chew my food without gasping
for breath and I had no idea if this was the way I would live out my life.