Living With Sleep Apnea

It all started in late 1995.  My wife, Dee, and I were invited  to  a  Christmas
dinner at a friend's house.  Other couples we didn't know were also invited.  We
met Joe and Gina, and noticed that Joe showed all the signs of recovering from a
stroke.   We  asked  Gina  what  had  happened  to  Joe,  and  she confirmed our
suspicions.  Dee asked Gina, "Do you know what caused the stoke?" Gina said they
weren't sure, but they suspected it was caused by Joe's sleep apnea, a condition
he was diagnosed with after having had the stroke.  We were not sure what  sleep
apnea  was,  so  Dee asked Gina to describe it.  She said, "You're snoring, then
you stop snoring and stop breathing, there's a long pause, and  then  you  snort
and  gasp for breath.  The cycle then repeats." Dee then said, "Dick does that."
Gina, in a stern voice said, "You get him tested, and do  it  soon.   You  don't
want him ending up like my Joe."

The next week, I called my doctor, told him what I suspected,  and  he  arranged
for  me  to  take a sleep test.  This was a simple procedure where I took home a
Pulse- Oximeter to measure my pulse and oxygen level in my  blood  as  I  slept.
The  device  had  a  clothes-pin  type of connector that I attached to one of my
fingers.  During the night, the machine  recorded  my  pulse  and  blood  oxygen
level.   The  next  day, I brought the device back to the clinic.  I expected to
hear the results the next day.

Two weeks passed, and no word about my sleep test.  I began to assume there  was
nothing  wrong.   Then,  I  got  a  metal sliver in my eye, and had to go to the
Emergency Room to have it removed.  The doctor who treated me had my chart,  and
remarked,  "It  looks  like  you had a sleep study recently.  You better contact
your regular doctor immediately, this doesn't look good." He  couldn't  tell  me
more, but as soon as I got home I called my regular doctor.  The nurse answered,
and  I found out my doctor had been away on vacation, and had just returned that
day.  I told her what happened, and she said she would inform the doctor.

A few hours later, I received a call from my doctor.  He had arranged for me  to
pick  up  a  CPAP machine from the sleep clinic.  I went to get the CPAP machine
immediately.  They also gave me the Pulse-Oximeter again to  test  myself  after
getting  comfortable  with  the  CPAP machine.  It was Friday, so the earliest I
could return the test results would be  the  next  Monday.   I  slept  with  the
machine  Friday and Saturday nights without connecting the test device.  Sunday,
I tested myself, and brought the results back to the clinic Monday morning.

They compared my first test with the new test.  In the first  test,  as  I  fell
asleep,  my  heart  rate would slow down slightly.  My oxygen level was at about
90%.  Then, you could see my heart rate rise to 120, and my oxygen level fall to
50%.  Then a spike, as my oxygen level would shoot up to about 90%, and my heart
rate would begin to decrease to about 110.  But then the heart rate would  start
to  rise  again, and my oxygen level would fall to 50% again.  Another "episode"
of sleep apnea occurred.  I had over 200 episodes in less than 8 hours.

The new test showed a dramatic improvement.  My heart rate stayed low and steady
all night long, and my oxygen level stayed at 90% or higher.  The  CPAP  machine
was  doing  its job.  I returned home feeling very good.  I noticed during these
first few nights that I slept like a rock.  I didn't move all night long.  I was
so tired from sleep apnea  episodes  that  my  body  took  this  opportunity  to
"recover" and "rest".

I thought my problems were over, but I was wrong.  After a week, I noticed a cut
on the bridge of my nose caused by the CPAP mask pressing against it.   The  cut
was  becoming infected and looked green.  I called the clinic and told them what
was happening.  I had to bring back the mask I was using and try  another  mask.
This one had soft plastic all around the opening that covered my nose.  The mask
pressed against my face differently, and was more comfortable.  I tried that for
a week.

I noticed the skin around my nose was breaking out in  a  rash.   I  called  the
clinic  again, and brought this mask back.  I was allergic to the plastic!  What
could be done?  The therapist suggested I try "pillows", nasal plugs that supply
the needed pressure directly into my nose.  Nothing touches  your  face  or  the
bridge  of the nose.  I didn't think that would work, but was willing to give it
a try.

What a difference!  This solved  most  of  my  problems.   And  it  had  several
advantages  the  masks didn't have.  The hose which feeds the air comes over the
top of your head, instead of across your chest.  My hands were free.  And  there
was  no  "leakage", no air blowing into my eyes, as was the case with the masks.
And I could turn over on my side and sleep with the side of my face on  the  bed
pillow.   I couldn't do that with the masks because they would get knocked loose
from my face, or the hose would get entangled.

There were a few problems with the nasal "pillows".  I had  to  alter  the  head
gear  slightly  by  running  a strap across the top and down to the sides.  This
kept the support in position under my nose.  I added home-made tube socks around
the hose joints to prevent small leaks from escaping.   And  I  had  to  add  an
additional 45- degree angle joint between the hose and the support.  This placed
the  support directly against my upper lip, and let the "pillows" slide directly
up into my nose.  Without this joint, the "pillows" came in  at  an  angle,  and
could also leak slightly.

Adding the 45-degree joint presented a new problem.   The  "blow  hole"  in  the
support now pointed down at my chest.  That blowing air gets cold!  So I blocked
off  the  blow  hole  and  drilled another near the new joint.  Now the air blew
straight away from me.  Lastly, the air flowing through the hole across the  top
of  my  head  was making the hose cold.  I added a golf cap, with the brim taken
off, inside the webbing.  This solved two problems.  It eliminated contact  with
the  cold hose, and made it easier to place the apparatus on my head.  Now I had
"what works for me".

After a few months, I began to notice something.   Prior  to  getting  the  CPAP
machine,  I'd  frequently  wake  up  in  the middle of the night with food in my
throat.  I thought I might have Acid Reflux disease.  I tried antacids, but they
didn't help.  Then I started on CPAP.  The Acid Reflux disappeared!  I've  since
come  to  believe  that  when  I stopped breathing, I put reverse pressure on my
esophagus, which resulted in the drawing of food up from my stomach.  Maybe  the
symptoms of Acid Reflux are also symptoms of Sleep Apnea.  I can't prove it, but
I haven't had an episode of food regurgitation since  I started CPAP  many years
ago. If you are taking pills to control Acid Reflus, and you are now using CPAP,
then I suggest you stop taking the Acid Reflus medication, and see what happens.
You may discover, like I did, that CPAP eliminates Acid Reflux.  If not, go back
to using your medication.  You've got nothing to lose by giving it a try.

I joined a support group, called AWAKE, and learned about other options  besides
CPAP  (Continuous  Positive  Airway  Pressure).   Diet  and exercise often helps
overweight people.  Others try surgery.  However, surgery doesn't  have  a  high
success  rate.   Usually  only  one  in  four or five are successful.  One of my
friends had a very bad experience with surgery.  Not only did it fail,  it  left
his  jaw  such that it would open as he slept.  Now the standard masks and nasal
pillows wouldn't work because he could not maintain pressure.  He was forced  to
use a full-face mask.

Another friend of mine was fitted with nasal pillows, but with the  wrong  size.
Instead  of  the  clear or cream colored pillows designed for large nostrils, he
was given the blue pillows designed for small nostrils.  The cone went  up  into
his  nose,  and  was  very  uncomfortable.  The correct size pillows should seal
against the end of your nose, not stick up into the nose.

If you suffer from the symptoms of sleep apnea, I urge you to get tested to  see
if  you  need  CPAP.  And if you do, get what works for you.  If the respiratory
therapist  gives  you  something  that  doesn't  work  for  you,  ask   to   try
alternatives.   Technicians  or  therapists  can make mistakes.  Remember, it is
YOUR life.  Sleep well.

Dick Guertin
Mountain View, CA