Contributed by Bob Rawlins, consultant to CAIRE Inc.~
Hey all, I’m glad to be back. It has been a crazy few months. Educating myself with the perils of sending triplets to college all at once, my goodness.
All of this has reminded me that educating ourselves with the help of others makes things happen much more smoothly. I’ve learned many things over the years along my own personal journey, and I have been able to share with others on the university websites and group chats.
So, with the journey you may be on, do you feel you have educated yourself enough on your disease, improving your quality of life, or just learning how to cope and live your life going forward? Have you reached out for help when you felt you didn’t or couldn’t find all the answers?
Today, I want to share some of the things I’ve been doing to educate and teach myself on to live my life, but also how to navigate my healthcare journey from my oxygen therapy prescription to receiving a double lung transplant to post transplantation.
One of the first things I always recommend is joining a support group.
There are many healthcare-provider-based support groups out there. Mine, the Cleveland Clinic, has been an excellent resource and support. Learn more by visiting www.clevelandclinic.org.
Another organization, the Pulmonary Fibrosis Foundation, can be found at www.pulmonaryfibrosis.org.
These are two very good places to go and learn about other people and their journeys. Great information about all lung diseases and an excellent website to help educate not only yourself, but your caregivers as well. This will help educate them, and your engagement in these type of support groups will help you as well. Share this part of our journey with your friends and family. The more you can educate yourself, and them, the easier the ride, not to mention far less lonely and isolating.
In addition to connecting via support groups with the Pulmonary Fibrosis Foundation, I am now advocating for the organization, and I have been asked to be a consumer reviewer as they embark on important research into how the government is looking to spend their money for respiratory health. I will share more in future blogs, but it is an exciting shift in my life as I learn more about the role we all have in advocating for ourselves, and for those who come behind us in their respiratory healthcare journey.
Another opportunity I have enjoyed for more than a year, has been serving on the board of directors for the Right2Breathe, a nonprofit organization, dedicated to providing education, awareness, free screening, and resources for people who are currently diagnosed or at higher risk of being diagnosed with respiratory disease. Check them out online at www.right2breathe.org.
Recently they have been able to ramp back up and engage with individuals through special in-person events designed to raise awareness and help individuals with lung disease gain important coping skills.
One of the most recent events hosted was with the Cleveland Clinic at the Norwalk Speedway in Ohio. Right2Breathe was present at the 3-day-race event was the perfect venue to help generate awareness and educate race fans on the importance of getting screened by health and respiratory professionals from the clinic, identifying any early signs of lung disease and next steps to take, including speaking with a clinician.
The highlights are very interesting:
- The 3-day race event, broadcast on FOX, drew over 70,000 total fans. Saturday was “sold out!”
- Because of the partnership with the Cleveland Clinic, respiratory therapists, nurses, and even a few pulmonologists were on hand to answer questions and provide on-site Spirometry testing.
- A total of 243 free spirometry tests were done with 22 percent of tests showing early signs of some form of obstructive lung disease by participants. In other words, 54 people now have information to take to their doctor to take next steps toward maintaining their lung health.
- We were able to create awareness in the National Hot Rod Association (NHRA) fanbase that becoming increasingly short of breath is NOT a normal sign of aging.
- Through continued outreach efforts (with help from our sponsors), we will continue our mission to provide a pathway to early diagnosis so that people can live better, longer lives.
There is some very interesting information in the highlights above, but the best part was the potential to receive important information and early detection from the professionals present at the event. If you ever have a chance to go to or have someone who could benefit from some of these events, please share. You could save a life.
You can always find Rigth2Breathe online. Its pulmonary chat support group is held every second, third, and fourth Tuesday starting at 4:30 PM, EST. Register for FREE at Eventbrite. Go to www.eventbrite.com to create a free account and then search for Right2Breathe events. Easy.
Today, I shared just a few ways to educate, learn and share with others. Look around and identify some opportunities to connect these, or some that are close to home.
You are sure to meet some very knowledgeable people from clinicians to patients who bravely share their journey. It’s tremendous!
So, friends, you can never have enough education about our journey, make it a priority.
Till next time, Love you all.
Bob Rawlins, 66, 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 19-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.
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.