Quality of life with COPD

I have chronic respiratory failure and believe I had it by the fall of 2014 when I started using supplemental oxygen 24 hours a day and was struggling to work full time in a grocery store.  In 2018 I was struggling to make it into a grocery store to buy food.  On pulmonary function tests (PFTs) in 2015 and 2018 my FEV1 went from 47% expected to 30%.  At 2 LPM on a home concentrator and an Inogen One G3 while active I was in a steep downward spiral of COPD and deconditioning.  I wasn’t getting the oxygen I needed to stay active and stop the downward spiral.

In 2023 a PFT showed my FEV1 had improved to 45% of expected.  I had found a way to get the oxygen I need to go to the grocery store without gasping for air and play a decent game of pickleball.  Increased activity leads to better health and a higher quality of life.  My at rest heart rate has dropped from the nineties to the sixties and seventies and my at rest blood oxygen levels have went from the high eighties to the mid-nineties. 

I didn’t find a cure for COPD.  I still have chronic respiratory failure.  I still get short of breath and my blood oxygen levels drop into the seventies and eighties when I am not getting the oxygen I need.  On the upside, getting the oxygen I need allows me to stay active and has improved my physical health, mental health, and quality of life!

Medical professionals tell us with COPD to stay active.  Most prescribe enough oxygen to keep us alive.  From my experience and what I have heard is that few if any prescribe or help us get the oxygen we need to stay active.  I need 3 to 4 LPM rest, 4 to 5 LPM while driving,  6 to 8 LPM while grocery shopping, 8 to 10 LPM for most other activities and up to 15 LPM for pickleball and other high exertion activities.  How many medical professionals would prescribe or recommend the LPM I use?  My pulmonologist recognizes in her notes I use up to 15 LPM but does not give me a prescription for it.

I support the Supplemental Oxygen Access Reform Act (SOAR) to make the supplemental oxygen we need more available.  To take advantage of the SOAR Act the medical profession will need to be educated on how to better prescribe the needed oxygen and learn how to help those using supplemental oxygen take advantage of it!!!

If done right, the SOAR Act will lower health care and other support service costs!

If I had been prescribed 2 to 10 LPM in 2014 I am sure I would have started an upward spiral and be getting a paycheck instead of SSDI Medicare and other government services.

Long term (3+ years) studies need done with COPD patients while receiving the supplemental oxygen needed to stay active.  Even those who have only activity induced desaturation need included.  It may be hard to motivate people with COPD to stay active, but receiving the oxygen needed to make it into the grocery store and take part in many other activities without struggling to breathe might be the needed motivation.  It worked for me!  Increased activity, physical and mental health, and quality of life are important outcomes to be documented.  I am sure hospitalizations and deaths will be lower.

I am a living example of what getting the needed oxygen can do!  I want my experiences and knowledge to help others with respiratory problems do the same.  I don’t have the clout or resources to do much on my own but am willing to work with others using my experiences and knowledge to get the needed legislation, funding, research and changes.  

Gerald (Skip) Miller

hors.sens1@gmail.com

https://hors-sens.com/2026.html

 

I support the SOAR Act

& hope it is reintroduced in 2026

I also believe a reset for supplemental oxygen

and the treatment of COPD is needed in 2026

My experiences and medical records show that staying active has lowered my health care costs and improved my quality of life even when I wasn’t getting the oxygen I needed.  Getting the oxygen I needed reversed a downward spiral of deconditioning and began an upward spiral improving my health and quality of life.  

Getting the needed oxygen will lower long term health care costs.

An Example – My Experience With Pneumonia

https://hors-sens.com/2026reset/pneumonia2025.pdf

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Looking back at memories from the past has brought up a lot of emotions that I didn’t realize were there.  At times I needed to stop, put my face in my hands and shed a tear or two.  Now that I have Liquid Oxygen I have forgotten or don’t want to remember the struggle to stay active when my body was starved for oxygen.  What made it so hard is that medical liquid oxygen was widely available but out of my reach.  My struggle to stay active and the suffering it caused was totally unnecessary.  The following PDF was hard to write.

Oxygen Reform & A Reset for the Treatment of COPD

 https://hors-sens.com/2026/02reset.pdf  x

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Portable Oxygen Concentrators create too much confusion!  Prescriptions for supplemental oxygen are in LPM.  Portable oxygen concentrators (POCs) and oxygen conserving device settings are NOT IN LPM.  POC manufacturers need to make their setting numbers equivalent or comparable to LPM.  As a person with COPD, I need to know if a POC or conserving device is able to fill my prescription!  If I don’t get the LPM I need medical expenses go up!

POC Setting Need to be Equivalent or comparable to LPM  - 

 https://hors-sens.com/2026reset/equalpocsettings.pdf

My POC experience  - 

https://hors-sens.com/2026reset/pocexperience.pdf

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 I have been told, as many others with COPD have been, keep your blood oxygen levels between 88% and 92%.  To do that I would have become couch potato.

The following is from, Oxygen therapy and inpatient mortality in COPD exacerbation @ https://emj.bmj.com/content/emermed/38/3/170.full.pdf

“One-year mortality: Mortality at 1-year post discharge in those treated with supplemental oxygen in patients who received supplemental oxygen on admission and survived to discharge, the risk of death at 1year was 28%.   The 12-month mortality rates, excluding inpatient deaths, were: 87% or less=32%, 88%– 92%=31%, 93%–96%=23% and 97%–100%=28% (including inpatient deaths these figures were 43%, 37%, 32% and 40%) (figure 3).  The 93%–96%group had a significantly lower risk of death than the 88%– 92%group, and overall (online supplemental table 5 includes further information relating to 1-year mortality).”  Echevarria C, Steer J, Wason J, et al Oxygen therapy and inpatient mortality in COPD exacerbation Emergency Medicine Journal 2021;38:170-177.

I believe, “Individuals with COPD should keep their blood oxygen levels between 88% and 92%,” is a dangerous Myth!!!

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HORSE SENSE AND OXYGEN

A reset is needed for the treatment of COPD

With a focus on Quality of Life!

https://hors-sens.com/reset.pdf

Oxygen needs to be prescribed to keep us active, not just enough to keep us alive.  We need medical professionals who are able to show us how to safely take advantage of higher LPM made available by the SOAR Act of 2026.

It has taken me eleven years to get to where I am today.  It would have been a smoother and quicker journey if the medical professions had been more help. 

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Contact   hors.sens1@gmail.com
Copyright © 2022 Gerald Miller. All Rights Reserved.