COPD

10/27/2024

November is COPD awareness month. Are you ready to lace up for lungs and get active for 30 minutes a day in November?

08/08/2024

Oxygen helps everyone have an adventure.

07/25/2024

This is probably going to be a weird post, but here goes. I am feeling incredibly blessed to be able to pursue a new career at the age of 80. This opportunity has been afforded me because I have COPD an incurable disease.

I am a religious person, so I immediately think, "God works in mysterious ways." As a child, I wanted to become a famous writer and be published. When my master's thesis was published, I considered that my dream had come true.

I am a private person, but I am also a very open person, so writing about my "Life Addicted to the POC", and my "Life Tethered to a Concentrator" has been healing.

My door to travel and whitewater rafting has been narrowed, but my door to writing has been opened.

04/10/2024

Caroline GainerCaroline Gainer
• You • You
Master's degree at Marshall UniversityMaster's degree at Marshall University
4h • 4h •

Please help us get the SOAR Act passed. Even if you don't need supplemental oxygen call and support SOAR.

Kelly LongKelly Long
• 2nd • 2nd
RRT, CCT, LMT,RYT-500, C-IAYT, Respiratory Therapy Navigator, Program Coordinator, MCLAREN LAPEER RegionRRT, CCT, LMT,RYT-500, C-IAYT, Respiratory Therapy Navigator, Program Coordinator, MCLAREN LAPEER Region
1d • Edited • 1d • Edited •
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SOAR Act Action Needed!!

Please help spread the word- so all patients made vulnerable to respiratory related diseases have access to critical oxygen and the expertise of Respiratory Therapsits!

As a therapist I have been able to provide care both in the home and remotely after discharge - with this cutting edge program- soon to be published will be 5 years of data. This service changes patients lives !!!

Links are below please contact your Senators and Representatives to co sponser the SOAR Act - so that all people can breathe!!!

https://lnkd.in/gcDg2_aD

https://a.lung.org/NN2S4wi

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I just took action asking Congress to pass the SOAR Act to reform supplemental oxygen. You can too: https://a.lung.org/NN2S4wi

07/03/2023

We Need a Real conversation bout oxygen
Many of us who have Chronic Obstructive Pulmonary Disease (COPD) need a little extra oxygen to get by. Others need a lot of oxygen to maintain their lives. All these people have issues with supplemental oxygen. In another column I referenced the best way that I have found for me to get the oxygen that I need to remain active.
Research is lacking as it pertains to long term use of oxygen by people with lung diseases like cystic fibrosis. People with pulmonary hypertension may not always benefit from oxygen therapy. People with Pulmonary Fibrosis probably require high flow oxygen to be active. More research needs to be done to determine best practices.
People who need more than 2 lpm of oxygen are severely limited in their ability to move around, go to the grocery store, go to doctors’ appointments, or go to visit a friend. The answer in the past for those people in the United States and throughout the world has been liquid oxygen. Liquid oxygen is no longer a viable alternative for most people in the United States.
Liquid oxygen would not solve all the issues for those who need higher levels of oxygen. In order to fly a person is required to have a concentrator with enough batteries to make the flight 1 ½ times. There are no portable concentrators that produce enough oxygen to be taken on a plane for those who need 5 liters of oxygen.
In the United States people with higher needs for oxygen are often tethered to a concentrator and chained to their homes unless they can pull a large oxygen tank behind them. The size and weight of the tanks limit the places that they can conveniently navigate. Try to imagine taking one of these big tanks to the movie theater. It may be doable, but most people will probably not try.
Now that I do not require oxygen when sitting as I am now, I have become aware of how aggravating it is to have to constantly turn the portable concentrator on and off. We need to have a device that will automatically regulate the oxygen flow according to our needs. Very little has been done to advance oxygen therapy into the automated digital world.
We also need lightweight portable concentrators that can produce more than 2 liters of oxygen on continual flow.
Because of all of the things that have been previously mentioned the COPD Foundation and their global partners are sponsoring World Oxygen Day. We are hoping that by bringing awareness of the problems with our current supplemental oxygen system that we can move the conversation forward and improve the lives of people who use supplemental oxygen.
As a member of the Oxygen 360 team, I want to invite you to participate in World Oxygen Day on O2 or October,2. Our fearless leader Mike Hess came up with the date which I think is quite ingenious. You can watch a short kick off video on Facebook.

06/09/2023

Many people don't get the training they need to get the most out of their oxygen equipment. If you are new to oxygen therapy, check out YouAndOxygenTherapy.com for tips, tricks, and advice!

01/14/2023

Pain Meds Are Not Always the Best Solution to Pain They Are Just Quicker and Easier.
Yesterday I wrote about pain medication being the solution to my debilitating pain from bursitis and arthritis. Pain meds were not the only treatments as you notice I was also prescribed an exercise regimen.
I was a very active young person and had my fair share of muscle cramps and back pain. I was fortunate that my family doctor was a DO who could do adjustments on my spinal alignment and relieve the majority of the pain.
I experienced whiplash from a car accident that was sever enough to cause an S curve in my spine which looked like scoliosis on an Xray. I was under the care of a chiropractor and a physical therapist for over a year, but the spine straightened, and the pain went away.
Shortly after being diagnosed with COPD, I had a very sharp pain on one side of my neck. I told my doctor about the pain and was given a set of neck exercises to do 3 times per day and the pain went away.
Pain is often our bodies telling us that something is out of whack. I was experiencing severe pain in my right side and mid back. It turns out that the cause was diverticulitis, a hiatal hernia, and acid reflux. Pain meds were not the answer here. Antibiotics and an acid reducer solved the problem. I had attempted to solve the problem myself and was taking OTC pain medication which was making the problem worse. It was a quick fix at first, but also turned out to be a bad solution.
We should not always want the quick fix for the pain. We must find the source of the pain and treat the underlying condition. Even though I am taking a pain medication for the bursitis and arthritis, Meloxicam is also an anti-inflammatory which aids is reducing the route cause of my pain.

06/27/2022

Is Pulmonary Rehabilitation Worth the Hype and Should I Have a Health Coach
I have a degree in health and corrective physical education and have always done some form of exercise almost daily. When I was young it was all about that flat belly and sculpted arms and legs. As I got older it was about trying to remain flexible and mobile. I can remember older people talking about people who were “bedfast” and proposing the importance of “keeping your legs.” These sayings resonated even more once I was diagnosed with COPD after my first lung collapse.
I was asked to help evaluate virtual pulmonary rehabilitation and signed up with two companies. With one group we also were assigned a health coach. I did not realize how much I would benefit from these programs. First, I found that some of my exercise techniques were not correct. I am not sure if the technique has evolved, or if I have just plain been doing them wrong all of my life. At any rate, the way I am performing these exercises now is much more effective.
The health coaching part of the plan has been extremely valuable. It is amazing how much just talking with someone who is tuned into your situation can help. I have realized that I had quit doing some of the things that were beneficial to my health. We can get things mixed up in our heads and the health coach can help us sort things out much as our rem sleep does for our brains.
This has nothing to do with the topic except sleep patterns, but I dreamed that my hair was vinyl siding, and that one side was on crooked. This was no doubt brought about by the fact that I had to have the vinyl siding people come back and fix something that they had done incorrectly. This was no doubt my brain putting the incident into the right file folders.
Back to the topic. I have gained so much from the pulmonary rehabilitation that I no longer have those terrible days of total exhaustion. I have waited for over a month to post this, because those days came about monthly or more often. I have learned to be better in tune with myself to better head off exacerbations.
I have never attended pulmonary rehabilitation in person, but if it is any better then it truly is a miracle. I remember reading that exercise is the closest thing to a miracle drug that we have. Pulmonary rehabilitation brings us exercise and so much more.
GO TO PULMONARY REHABILITATION IF YOU GET A CHANCE!!!

05/24/2022

Was I Confused When I Spoke to Jane Martin, or Did I Lie When I Reported on the Action Plan with Stephanie Williams?
One of the topics that I am often asked about is the COPD Action Plan. I refer to this document daily to determine what I will do that day. The action plan lets me determine if I am having a green, yellow, or red day. The plan also gives me instructions about how I should proceed with my day depending upon what color I assign to the day.
Several years ago, I did a session in which I was interviewed by Jane Martin on the use of the action plan. I told Jane that my action plan said that if I was tired more than usual for more than one day that I should consult with my doctor. When I made the presentation for Stephanie Williams, I said that my plan said that I was to consult with my doctor if I was more tired than usual for 2 days in a row.
Another discrepancy in my stories is that when Kristen Willard asked me if both my pulmonologist and my general practitioner both used my action plan, I said that I did not remember. After visiting the interview with Jane Martin again I now remember that at first, they both had my action plan, but a year or so into the journey with COPD my general practitioner asked me if my pulmonologist was going to manage my COPD and I said yes. He and I have not discussed the plan since, though he is the one who has given me the antibiotic prescription that I keep on hand.
OK, so do you have a logical explanation as to why there is a difference in your number of tired days? Well, I am glad that you asked, because “Yes, there is an explanation.” The COPD Action Plan is a living or changing document. I have instructions to keep some over the counter medications to use as I rest that first tired day. If this medication does not solve the issue, then I am to call my doctor and begin the antibiotics and sometimes also a round of Prednisone. The plan has been changed to meet the changes in my personal journey.

05/16/2022

What is Sarcopenia and Why Should I Care About It?

According to Healthline.com Sarcopenia is the loss of muscle tissue due to aging. A further refinement of the definition is found in ScienceDirect in which the refined definition says that the person is no longer able to lift or perform everyday life functions due to lack of strength. OK, this looks like a normal part of the aging process, but another article in the same publication tells us that there is primary and secondary Sarcopenia. Secondary Sarcopenia or acute sarcopenia has been defined as muscle loss due to hospitalization, inflammation, muscle disuse, and malnutrition.
Doctor Lee Goldman proposes that a treatment may include the introduction of easily digested protein into the diet. This sounds like an oxymoron. Protein in not easily digested. I then think back to a conversation that I had with my doctor when we developed my morning coffee drink. We included whey in the drink because she said that she was not sure that I was able to digest complex protein. So, I need to make sure that I continue to drink my super coffee in the morning and an additional cup after I exercise in the evening as I also learn that taking in protein after exercise may help me build muscle.
The main focus in most articles was on the need to remain active and to develop an exercise routine that you keep with a great deal of regularity. The thirty minutes a day of aerobic activity that the CDC recommends should be accompanied by 2 or more days of strength training. This is the scientifically based recommendation by the CDC.
So, if you have a chronic disease like COPD, you will need to be sure to keep to at least the minimum CDC requirements so that the loss of muscle mass is not accelerated. We just have to “Keep on keepin on.”

04/24/2022

Here Is the Thing I Want You to Know About Chronic Illness
I am addressing medical professionals as well as patients here. In my teens I began to experience severe heart palpitations. My doctor was the man who delivered me, and he set about doing everything that he could to find out what was causing the palpitations. I spent a few days in the hospital getting the glucose toleration tests and a variety of other tests. He sent me to one of the leading diagnosticians in the nation at the time. The conclusion was that I suffered from hypoglycemia or low blood sugar. At the time little was known about how diet plays a role in controlling this condition. Instead I carried sugar cubes in my pocket everywhere I went just in case I started to feel like I had an episode coming on. The tests also showed that I had a B complex deficiency for which I was prescribed a prescription B complex vitamin. I remember feeling so guilty because the vitamins cost 10 cents per pill. My father was a hard-working famer raising a daughter by himself as my mother died when I was 13.
I got married, went to college, finished my degree, and began teaching. About 2 years into that life, I began having the palpitations once again. I went to a local doctor and explained what happened in my youth and told him that I was having the palpitations once again. I could feel the eye roll and just clamed up about the palpitations. I visited more than one doctor with the same outcome and just vowed to myself that I would not mention it anymore. I also had developed a rapid heartbeat. Each doctor would say your heart is beating very fast. Is that normal for you?
Maybe I just had a bad luck streak with doctors, or maybe I seemed to young and healthy to have these symptoms. I do not know what the situation was, I just know that I dreaded the possibility of having one of these attacks in public. My husband was sure that I was not telling the doctor how bad the palpitations were and accompanied me to an appointment. He told the doctor that the palpitations were so severe that they bounced me up and down on the bed. He left the office in a huff as he experienced the same lack of concern that I had experienced.
Fast forward to a move to the area which I now live in. We became acquainted with a physician’s assistant one Saturday afternoon as the result of my husband cutting his thumb almost off with a very sharp knife. The said physician’s assistant was on duty and did an expert job of sewing my husband’s thumb back on. He did not experience loss of feeling or use of his thumb. We had found our medical home in this little one doctor clinic in our town. I felt comfortable enough to bring up the palpitations to this wonderful professional who got right to work trying to determine the root of my problem. My thyroid hormone levels were through the roof, and I was sent to see the new doctor in town who was starting an endocrinology department at the local hospital.
Even though the local PAC was doing all that he could to find the root of my problem, he did not give me the peace that the endocrinologist did. He walked in and said I notice that you have a problem sitting still and I also notice that your hands are shaking. Do your ankles feel cold when they are not, and do you have heart palpitations? I wanted to jump up and kiss him. I felt so relieved that someone in the medical profession knew my symptoms and hopefully had a plan to address them.
The point of this rant is that most people do not pretend to be sick in fact people with chronic illnesses pretend to be well for the most part. I think that medicine has come a long way since my experience with the doctors who told me that I had too much time on my hands and prescribed “nerve pills” which I dumped in the toilet. Sure I needed more to do, I was working full time and going to school 2 nights a week. I also had an ailing father and husband who needed some of my time. Something else to do was the. last thing I needed.

03/22/2022

I Have a Charmed Life in Spite of or Maybe Because of COPD
I have had the opportunity to meet with and work with some amazing people since I embarked on this journey with COPD. I have served on panels and boards which I would not even have known about had I not had COPD.
I am presently evaluating research projects for approval and funding. I would not have known about this opportunity had I not had COPD. This latest endeavor harkens back to my teaching days and the Weir High School Science Explorers Club. I evaluated and helped refine research projects and papers which were far above my pay grade in the years that I sponsored the club. My first Grand Prize winner developed the robotic prelim of the unmanned mine explosion explorer.
To this day the inventor does not believe that I had no clue what he was talking about in his paper. What I did know was how to conduct scientific research and how to write a research paper. I can put that knowledge back to work in evaluating real-time, high-stakes projects today.
If I could have a choice, I would not choose to have COPD, but because I have it, I have been given amazing opportunities.
I will never be able to thank the people at the COPD Foundation, Right2Breathe, American Lung Association, and various Facebook groups including Ultimate Pulmonary Wellness for all the wonderful plots in my COPD life.