Needed
& Horse Sense
COPD is all about oxygen, or the lack of it!
The Professionals offer treatment plans, medications,
surgeries, pulmonary rehabilitation, and more to help us breathe
better. When we need
oxygen to keep us alive it is prescribed.
When we have severe exacerbations and need hospitalization,
they can work wonders.
The medical professionals know how to keep us alive.
They fail when it comes to getting us the supplemental oxygen
we need to stay healthy and live a fuller life.
When I travel, visit national and state parks,
museums, and other places of interest I am the only one there using
supplemental oxygen.
When I go to a gym to exercise, I don’t see supplemental oxygen.
When I go to tennis or pickleball courts to play I don’t see
anyone else using supplemental oxygen.
I have seen three others working with supplemental oxygen
like I did, and seeing someone using oxygen while shopping or out
and about happens occasionally.
Why aren’t more people who use oxygen active and out and
about more often?
Because the
Professionals don’t prescribe the needed OXYGEN!!!
And the present
system doesn’t want to pay for it!!!
I use 3 LPM at rest and 10 LPM to play
pickleball. I use from 3
LPM to 10 LPM depending on the activity.
My first prescription for oxygen was for 2 LPM.
Two months later I was given a walk test to see if I
qualified for a Handicap parking permit.
At a slow walk it took 3 LPM to hold my blood oxygen levels
in the mid-eighties. Did
they up my prescription?
NO! The Professionals
are well educated, but when it comes to prescribing oxygen…
.. . ?
I have a high school education and am not
giving medical advice, but don’t hesitate to ask your Dr. about what
you read here. The
Professionals are well educated but I have personal experiences and
know what has worked for me.
I have over 50 years of experience living with asthma and
allergies. I have close
to 30 years of experience of dealing with COPD.
I did some things I wouldn’t recommend and many I would.
I believe I am just like others on supplemental oxygen and
believe more of us should be enjoying our national and state parks,
museums, and other places of interest as well as being more active
and out and about.
Professionals keep us alive.
Not good enough.
They need to help us live life and raise
our quality of life!
Somewhere around 2006 my blood oxygen levels
started dropping into the eighties when active and staying in the
low nineties at rest.
Around 2010 I started checking my blood oxygen often so I would know
when I was pushing too hard.
I used pursed lip breathing when my blood oxygen levels would
drop to the seventies or eighties. I
could raise it to the low nineties quickly so I felt safe knowing
how to bring my oxygen levels back up.
I don’t mind my Sp02 in the mid-80s and the
low-80s are ok if I am active and they only stay there briefly.
I don’t like a Sp02 in the 70s but I don’t panic,
just do pursed lipped breathing, and bring it up.
From 2006 to 2014 it was more of a struggle to
breathe each year. I
kept working, playing tennis and doing what I could with my kids.
In 2014 my blood oxygen levels began dropping to the mid-80s
at night. I would get up
and get on an ab/core roller coaster machine to get my heart and
breathing rate up. Then
get a few more hours of sleep.
I became so tired I didn’t know how I could make it another
day. I went to my Dr.
and got a prescription for supplemental oxygen and bought a home
concentrator. After I
got the concentrator all I wanted to do when I got home from work
was turn the oxygen concentrator on start breathing oxygen.
I felt so much better with supplemental oxygen
from a home concentrator and knew I needed to get a POC.
I didn’t know it then, but the Inogen One G3 (4 settings)
that I bought would supply me with about 2.5 LPM, not the equivalent
of 3LPM that I needed at a slow walk.
The Inogen G3 helped but was far short of what I needed.
Congress, Medicare, Pulmonologists, Respiratory
Therapists, the American Lung Association, the COPD Foundation, and
many more missed the boat by letting access to liquid oxygen float
away. In January
2015 my FEV1 was 47% of predicted.
In August 2018 my FEV1 had dropped to 30% of predicted.
In a little over three and one-half years my FEV1 had dropped
36%.
From 2014 until 2018 I struggled to stay
active. I know what it
is like when my body starts shutting
unnecessary muscles down and need to rush to the restroom.
It can be embarrassing.
I know what it is like when you’re struggling to get the
oxygen to stay active and are gasping and heaving for air.
I understand why we start sitting around more and more and
start a downward spiral leading to more and more health problems.
I wish I could explain the struggle better.
And what did the struggle get me?
My FEV1 dropped 36%!
In 2018 I got a Respironics UltraFill and could
fill the 3,000 psi tanks that came with it.
I was able to experience what 6+ LPM would do for me.
It made such a difference in my life.
The downside was a limited supply of oxygen.
When active and playing tennis, I could empty my tanks in
about 3 hours and then I would spend 16 hours filling them.
Life was less of a struggle, but I knew I wanted more oxygen.
In 2020 I bought a liquid oxygen reservoir and
two Companion 1000Ts I could fill from the reservoir and use for
ambulatory oxygen. I
could see liquid oxygen was a real-life changer for me.
Instead of taking 5-6 hours to fill a 3,000-psi tank with 600
liter like it did with the Respironics UltraFill I could fill a
1,000 liter Companion 1000T with liquid oxygen in 5 to 6 minutes.
I could play pickleball in the morning and spend the rest of
the day out and about and have the oxygen I needed.
In 2021 I bought a larger liquid oxygen reservoir that worked
better.
I believe my health may have picked up a little
after I got the UltraFill, or at least stopped the downward drop.
When I started using liquid oxygen, I saw benefits but
because of cost and a learning curve it took two years before I
started seeing a dramatic improvement in my ability to be active and
my health.
From June 2022 to June 2023, I have had a
steady supply of liquid oxygen costing about half of what I was
paying in the Northwest, my blood pressure has dropped by 20%,
the swelling in my lower legs is gone, I have lost 50 lbs., I
feel better and have more energy.
Having the oxygen, I need to stay active has improved my
health, sleep and I enjoy life more.
Liquid Oxygen gives me the oxygen I need.
A POC won’t and tanks alone are too bulky.
If liquid oxygen had been readily available in
2014, I doubt my FEV1 would have dropped and instead of receiving
SSDI I would still be working!
Just stop and think about it a minute.
Why did my health go downhill so quickly when I was not
getting the oxygen I needed and then get better even more quickly
when getting the oxygen, I needed?
Medications may help keep us alive, but having
the oxygen we need keeps us active, healthy and leads to a higher
quality of life.
Liquid oxygen
improved my quality of life by leaps and bounds!