Needed Oxygen

& 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!


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