Contributed by Bob Rawlins, consultant to CAIRE Inc. ~
Part 1 of a series sharing the patient perspective of being prescribed and using supplemental oxygen.
Ok, I know when you are first told about needing supplemental oxygen it can create anxiety. Why? The unknown, what the future will bring? Is this the beginning of the end of life as we know it?
All kinds of things run through your mind, and it does create that awful feeling of the unknown.
But I am here to share with you that it’s not. I have had six years of oxygen therapy and can easily relate to those thoughts and feelings with you, and how I dealt with them.
I said from the very beginning you must have an attitude (‘tude). The right mental approach and attitude are everything. The power of positive thinking is so important. There will be bad days, no doubt, but it’s how you overcome those days that keeps you going. You’ll learn through your journey how to get through those days when they inevitably happen.
For me, it all starts with believing — Faith, not what’s seen but what is unseen. Meditation can help. And of course, your caregivers, family and friends that provide you that proper support to give you strength to get through those bad days and get ready for the next day.
This change isn’t easy. In the beginning, take each day at a time, and try not to look into the future right now. Save your strength for each today!
Most importantly, ask questions. If you are new to this lifestyle or a veteran, you can never ask a wrong or too many questions.
When I was volunteering in the hospital and speaking at support groups there are a lot of comparable questions asked by both newcomers and the “professionals.”
Talk to someone who is either on oxygen therapy or find a support group to share and gather information from current users.
What questions would you ask an experienced oxygen therapy patient?
Vanity is a big concern for many. People looking at me, would say, “I’d rather stay home.” This is where the ‘tude comes in. You are special because you refuse to let your new circumstance keep you from the things you use to enjoy. Take the special treatment, handicap parking, and front row seating. People are willing to help you, so take the help. Smile at them. #weallhavearighttobreathe.
How long did it take to get used to being on oxygen?
Not long, because without it I was not able to breathe. 😊
Remember, it’s like any other prescription — like blood pressure or cholesterol medicines. If you have the prescription, your clinician has determined you need supplemental oxygen.
I don’t want to become dependent on it.
I love this comment.
We are all dependent on oxygen. No one can live without it, supplemental or not.
So, breathe in the prescribed supplemental oxygen you need to maintain your health and quality of life.
What did you learn or research?
Long answer, but I got involved in researching everything related to the prognosis from my doctors and caregivers. From this I was able to determine next steps — a direction to focus on as I embarked on the journey.
I learned by getting connected with support groups and experts in the field of oxygen therapy. Resources I took advantage of included the Pulmonary Fibrosis Foundation, Right2Breathe, and a Pulmonary Support Group, sponsored by the Cleveland Clinic, and CAIRE Inc., to name a few sources.
Also, there are tons of information on the internet about supplemental oxygen therapy.
Remember, being a part of your care is essential. This will keep you focused on your journey. I started asking what I can and cannot do. What is it that you want to accomplish and ask your clinician and network of caregivers what is the best way to complete that task?
Did you travel?
Absolutely, I got a portable oxygen concentrator (POC) that allowed me greater mobility. You can investigate with your oxygen supplier, and I would suggest you call or visit www.caireinc.com. They are the experts and can help connect you to one of their many partners to assist you with your needs. But don’t brood about it, do it. Harness that ‘tude. 😊
How mobile can you be?
Great question. You can be as mobile as you want to be while staying safe as well.
Look, we can’t do everything the way we used to before oxygen therapy. But I sometimes find people doing nothing, and that isn’t good.
What is it that you want to do?
I was able to snow ski, play golf, and coach soccer. I attended sporting events (with special seating), went on a cruise, and traveled.
I was on a minimum of 3-4 liters per minute (LPM) of supplemental oxygen, 24/7. I learned to have the right POC, or tanks to help supplement my activities. There will definitely be trial and error on your part. Make it fun and try it when you have your support network with you so they can help you if needed.
Friends, life is short, and you can make it even shorter if you give in to the challenges we are all faced with. There is always hope.
But we must help create that hope with our own desire to succeed at living our best lives and play the best hand with the cards that are dealt to us.
Don’t ever give up, EVER.
Till next time!
We will talk about other situations we need to be aware of, and how to deal with those situations.
#Smileeveryday
#attitude
#Laugheveryday
#touchaheart
#youhaveaRight2Breathe
Love you all,
Coach Bob, Double Lung Transplant, now no supplemental oxygen needed, 😊
Bob Rawlins, 64, of Medina, Ohio, is a double lung transplant recipient and a patient advocate for those who suffer from respiratory diseases and have been prescribed supplemental oxygen therapy. He is husband to Terese and father to their 17-year-old triplets. He also has two grown twin sons and four grandchildren. He serves as a hospital volunteer, band dad and chaperone, and marketing guru.
If you have been prescribed oxygen therapy, learn more about CAIRE by visiting www.caireinc.com/patients or by calling 1-800-482-2473 to talk to an oxygen advisor.
The contents of this blog post are not intended to substitute for professional medical advice. Please consult your physician for personalized medical advice. When using any oxygen therapy device please consult the applicable product instructions for use for product indications, contraindications, warnings, precautions, and detailed safety information.