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To: Subject: copd Date: Sat, 15 Mar 2008 10:17:52 -0500


Hi!  I have been living with COPD for almost 18 months now.
I hope these writings will help anyone who has been on
oxygen for just a few hours and those who have been on
for many years.  More about me at the end.

Seven Topics Covered:


 How to wash your hair.  I have long hair, and it holds
 a lot of water, it's heavy and thick.  I use a hand
held shower head and rubbermaid stool to help me.

Remember to always start off with cooler water that won't make steam. Steam is hard to breathe, even with the oxygen hose on.

 1. I separate the hair using three rubber bands.
I section off the top, including the sides, then
I split the back of the head into two parts, like
for pig tails and band those two parts up.

2. I get into the shower, bringing the hose over the
top of the shower curtain so that water doesn't travel
along the hose onto the floor.

3.  I sit on a small foot high Rubbermaid stool.  This gives me
stability and makes it easier to wash and rinse my hair.

4. Start with one of the back sections of hair.  Pull
off the rubber band and wet and wash and rinse as much
as you need, using your hand held shower head.
Then, wash and rinse the other side of the back.  Then
once you have the back hair and scalp clean, do the top
by bending your head forward so that the top of the head
can be rinsed by holding the shower head into the top of 
head and the water doesn't go anywhere but the top of
your head and mostly down in front, but not on your face.
You can rinse the whole head now if you think it's needed.

5. Stand up now and rinse your body and face.  

6. Grab a towel before you get out of the shower, so you
can dry off quickly and not get too cold.  Then, step
out of the shower and rest on the seat for awhile.

I like to brush my teeth before I get into the shower
so that when I get out, all tired, I am clean and ready to put
on some clothes and have a nice rest.


I use a stationery bike.  There are no
parts to wear out, there is no energy being paid for,
there is only the pace you set for yourself and a
nice comfortable place to rest in between exersizing.
And you get to work out a large number of muscles at
one time.

I am on 3 to 3.5 liters of oxygen per minute, so I 
can do about 5-10minutes on the bike for a normal
daily work out.  I try to do more and usually can
do 7 or 8 minutes a day.  It usually takes me
about three times as long to actually do the work.  So
a five minute work out may take me up to fifteen minutes
with resting time included.  

I also like to walk around the grocery and big box
shopping stores with a cart. They are usually clean,
brightly  lit and, if you can pick your times, not too filled
with people to bump into.  If you can do a hour
or even fifteen minutes, you will have a better day.
Another of my favorite excersizes to do is leg lifts.
I lay on my back on a flat surface and lift one leg then the other
in turn. I start with 12 lifts to warm up, then, I 
continue with another 12 or 24, or whatever I can
manage without getting too winded.  I go up to 140.
I do what I am able to do at the time. I work up to it.
I take my time.   If it takes an hour, that's okay,
it's still exercize and it still counts.  I now have
a completely flat stomach.  Benefits like that are nice.
I do arm circles and all the ways I can move my arms, 
I do.  It seems to help the chest muscles a lot. and it helps
get rid of the flagging wings we develop on our arms.

Any kind of stretching you can do is very good. Don't ever go farther than you think is comfortable. But do try to go further than you normally can by a little bit. After you stretch, go back and stretch again, the same way, and you will find you can go an inch or two further after you have loosened up.


Don't mind if people look at you.  They are either
concerned, don't understand what they are seeing,
simply curious, or just spaced out.  

Children are especially curious, and some might 
get a little afraid. Mostly from a bad movie they
have seen, more than of you or me.

I try to smile and allow the children to ask
questions.  I tell them this is how I get my air.
I show them that I can take off the cannula for a
moment or two without falling over. That seems to
make it alright for them.

I am thinking about putting a pretty flower with an
O2 sign on my oxygen condenser so people will see it
and feel better knowing what it is.


When I first went on O2, I slept well.  
Then I started loosing my cannula, or my 
nostrils would clog up or my throat would
dry up in the night and I would wake up
in a start.

So, I went for two months like that,
sleeping only 4-5 hours a night.  Then,
I'd nap in the day and that messes up
the sleep cycle..  

Turns out, I was not getting enough O2,
because we wanted to use the Sequal 
Eclipse at night and that only goes up
to 3.0 lpm.  We switched over to the
Invacare O2 condenser at 3.2 lpm or so.  
It has  been much easier to sleep.That,
plus  I have adjusted my inhaler to
just before bed time and early in the 
morning because it helps clear my 
nostrils, so my throat does not dry
up and that feels so much better.
I keep a jar of water near my bed and take
small sips throughout the night.


We have a clip that has a snap on a small
piece of plastic which is used for employee
security cards.  The hose fits right in the
snap on plastic piece and the clip clips
on a strong part of my clothing...I use
the seam for strength on the side of my
garments.  The hose will stay on one side,
will absorb the shock of the dog laying 
on your hose before your neck gets wrenched.
If you don't have a clippy thing, try to
fashion one from some things in your sewing 
box or bag clips used to close potato chip bags.


We bought a Sequal Eclipse oxygen condenser
for travel.  It is a good machine, but several
things went wrong for us.  (We ALWAYS carry a
back up tank and regulator in case we need it.)
The Eclipse plugs into your car cigarette lighter,
ironically enough.  Well, the part that touches
the lighter metal seemed to be crooked and would loose
solid contact, the Eclipse would start beeping and
wouldn't stop,  so  we had to have that replaced.
No problem. The company  stands behind it's product
very well.  I tell you this story so you can see how
important it is to check out every detail of the
equipment you are using to support your life.


I have not been to the respiratory therapist yet,
but I think it is a good idea to load up on some
air by breathing deeply as possible before you
go and start walking around or eating or going
to the toilet.  All these things require an
extra amount of oxygen and you must be sure to
do yourself proud and get all the oxygen you can
to avoid feeling bad.

Once you get to where you are going, if you are
out of breath, my nurse told me to sniff in through
my nostrils, very short and quickly, hold one second
and send air out through pursed lips.  You should 
hear a shhhhhhhhhh sound for a count of three or so.
I do that three times...sniff in, hold, blow out for 3
with pursed lips, then continue to breath in your 
normal manner.  This helps you recover your breath
more quickly.


My Individual Personal Situation

I have about 15% of my lung capacity and I seem to have the familial gene in that I got the disease in my early forties even though I barely smoked one pack a day and never had an other bad habits. I now eat very well with fruits and veggies and a super food supplement every day. I am nearly 60 years old.

For ten years, I went without oxygen even though a doctor told me I should be on it. I did not have the money and I did not want to be tied to a machine or tank, but it was very hard and my life was very planned, so I was never in a situation for long without an controlled atmosphere and temperature range. As a result, my lungs grew and my white blood cell count went up, allowing some relief. The elongated lungs however disallow some procedures as far as getting new lungs, but there is as of this writing an new mechancial lung that is soon coming on the market that will help many people get out and about. Check with your doctor. I don't recommend going without oxygen, but I do want people to know what is possible. In the end, I had to go on oxygen because my heart started failing, as was evidenced by swollen ankles. My heart has since healed by itself and I am otherwise very healthy. I did quit smoking right after the doctor told me I needed oxygen ten years before I started on oxygen. The oxygen helps me to feel very good most of the time. The Spiriva and Albuteral inhaler are a bit tricky and tend to make me go up and down energetically and make me feel hungry when I am not. It's a balancing act. I have gained 10 pounds over the eighteen months, but I was underweight when I started, because my body was trying to eliminate any extra carry weight.

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