Maria, a young retiree since October and a qi gong practioner, has had COPD, GOLD stage 3, since 2003, but she remains active as much is possible. She loves outdoor cycling (electrically assisted), swimming as much as possible, walking with her dog in the outdoors, and travelling. For World COPD Day, she tells us her story with COPD and using oxygen.
When and how did you learn that you had COPD?
After a pulmonary decompensation, I had a short stay in the hospital and the doctor told me about COPD, but did not explain it much further.
What was your treatment?
Symbicort, and quitting smoking.
When were you told about Oxygen Therapy?
In 2013, during my first time being in pulmonary rehabilitation. During a stress test, the pulmonologist told me: you need oxygen, I closed my ears and didn't hear anything from the conversation anymore. I was shocked. It took the patience of another pulmonologist, still mine today, to convince me of the benefits of being on oxygen. It took him two years and a lot of patience.
What is the principle of Oxygen Therapy? How does it work?
The principle is simple, you have to oxygenate as much as possible. For me, it's 24 hours a day with a few breaks when I "do nothing". You must have an oxygen supply of at least 15 hours a day, knowing that if you stop oxygen, its level in the blood drops immediately, because you don't store your oxygen. My pulmonologist regularly checks my breath (eFr) and performs gas measurements (blood sampling in the artery) to get a precise idea of my oxygen level in the blood and my general condition.
How does it work on a daily basis?
A tank of O2 at home, a portable tank that I fill on this tank, and following the instructions of my pulmonologist for the flow (for me 1L/mm on a walk and at night, 2L under stress) I go out with the portable on my shoulder or better in the backpack. With the portable, I have the ability to go for 5 to 6 hours with it. For longer outings, I use an electric concentrator to give me peace of mind. Every week, people come to change my tank - a mandatory appointment, except for people who are on an electric concentrator. Otherwise, it doesn't change my life, I go out, I drive and I have a full social life.
What are the advantages of being on oxygen?
I am much less out of breath than before. My muscles are less sore and my heart is more rested. I sleep better. For these reasons, I manage and am able to do more activities.
What are the disadvantages?
Always being connectedto / relying on it, the limited length you can go for outing or social events (until you learn how to do so with the portbale and electric concentrator, which comes with experience), the looks and stares of others (after a while thogh, you get used to it) and the extractors are noisy.
How could health professionals improve your daily life?
By improving the devices we use: reducing the noise and weight, and improving the autonomy time. On the physical side, there should be structures where sports and activities can be participated in by those on oxygen in the presence of doctors or physical therapists. On the moral side, I would like people to be more willing to listen.
Do the stares bother you still?
It took me a long time to get used to my own devices, so now I tell myself that if I want to "move", I have to do so with my oxygen. So I am no longer embarrassed at all and if people look or stare at me, I just react with with my most beautiful smile.
Are you feeling better now that you're on oxygen?
I have to admit that some time ago, I would have answered no, now I say 100% yes. I have plans to go on a trip by plane in the near future, which was unthinkable before.
What sould a patient know before starting Oxygen Therapy?
That you should not be afraid of oxygen therapy;consider it as a drug and above all respect the times and flow rates recommended by the pulmonologist. Continue or resume regular activity, eat healthy and of course, I almost forgot: STOP SMOKING.
What advice would you give to someone diagnosed with COPD?
First of all, do everything possible to avoid having to resort to oxygen therapy too quickly. Participate in physical therapy and pulmonary rehab; learn ways to adapt your physical activities and activities of daily living; search, and be open to, advice on how to live better with COPD. Therapeutic workshops during the rehabilitation period are valuable for new COPD. It is also necessary to talk about your diagnosis with your family, friends, doctor, and of course, ask all the useful questions to your pulmonologist and medical team.
During rehabilitation, stress tests are done, cycling and walking, which allows the health care team to determine the level of your activities in related to your pulmonary ability. If you go on oxygen, make sure to force the provider to give you all the information they have and that you need. There are indeed several types of portables, cases, and devices/adapations to make the burden easier.
You should also take your medication exactly as ordered to and consult a doctor or pulmonologist as soon as you begin to experience unexplained coughs or shortness of breath appears.
You should also consider getting vaccinated against pneumococcus and influenza.
FORGET that you are sick and LIVE YOUR LIFE TO THE FULLEST!
Would you like to add anything else?
I sincerely believe that I have improved and am becoming close to a sense of serenity despire being on oxygen. And as I often say, DON’T GIVE UP ON ANYTHING! Never allow people, doctors, family or friends to choose for you.
One more word: THANK YOU to all those who help me and love me.
Members, please feel free to comment, ask questions, and thank this member for the testimonial.