After an exacerbation and month-long hospitalization in October 2016, I was discharged and required the use of continuous supplemental oxygen. Prior to this hospitalization, I had been participating in a modified high-intensity interval training (HIIT) program for about nine months, which had a tremendous impact on my physical and mental health. The program helped me cope with this change and ultimately led to my ability to maintain an active lifestyle while on oxygen until my transplant in September 2017.
The modified HIIT program was implemented by my physical therapist for patients with cystic fibrosis. The program consists of performing exercises (i.e., upper, core, and lower) in quick succession with little rest between exercises. Depending on my choices, the workout can last about 30 minutes — longer if warm up, cool down, and stretching are included.
Beliefs Before HIIT
Prior to starting the HIIT program, I used pulse oxygen with activity and had preconceived notions about what I could and couldn’t do. These psychological barriers kept me from pushing my exercise boundaries. I viewed supplemental oxygen as a reminder of my deteriorating lungs, and I avoided anything more strenuous than daily walks to evade the need to increase my oxygen usage. I didn’t view myself as much more capable than walking around the neighborhood and even if I had wanted to push myself, I lacked the knowledge, confidence, self-efficacy, and capacity to truly do so.
Impact of HIIT
My perceptions and beliefs changed immediately following the first HIIT workout at clinic. I used 3 to 4 liters of continuous oxygen with the workouts (more than I used during daily walks). My physical therapist challenged me, and when I experienced what oxygen was able to help me accomplish, I immediately began to see it as a tool for my benefit as opposed to something that should define my limitations. A switch was flipped in my mind and that sudden realization — that increasing my oxygen usage could help discover my true physical potential — was a euphoric sensation.
As 2016 rolled on, I performed these workouts religiously 3 to 4 times a week at home, making sure to track them, send the data to my physical therapist, and vary my chosen exercises. Having a regimented program helped me establish a routine and increased my confidence, motivation, and physical strength. As my self-efficacy increased, my belief that I could push myself further became embedded in me.
Transition to Continuous Oxygen Use
Despite the change in my beliefs, the suddenness of coming home from that hospitalization and having to be on 2 to 3 liters of continuous oxygen all the time was challenging. It was frustrating that — despite my hard work over the prior nine months — I still ended up in a position I didn’t want to be in. Thankfully, I held onto the knowledge I gained and the drive I developed and got right back to work rebuilding strength and trying to regain lost lung function. My oxygen needs increased to 5 to 6 liters of continuous oxygen with these workouts but I was able to regain my strength. My lungs didn’t improve much and if they were going to limit me, it was important to make sure the rest of my body could pick up the slack.
Impact On Life Outside of the Home While On Oxygen
The impact HIIT had on my ability to stay active outside the home while on oxygen was tremendously valuable. The strength I gained provided the energy and endurance that enabled me to get out and socialize. The confidence I gained made me more comfortable wearing portable oxygen in public, both of which benefitted my overall well-being.
I was able to get back on a skateboard, mildly participate in pick-up sports with friends, socialize and attend weddings, go to the movies and the beach, and continue to enjoy pool volleyball games with my neighbors. These things had their limits, but it felt good, despite being on oxygen, to be able to do small things that brought me joy.
Ironically, it seemed as I adjusted to being on oxygen and worsening lung function, I became less restricted. From the time I was placed on continuous oxygen until my transplant, I was physically the strongest I had ever been.
The journey toward living an active lifestyle on oxygen wasn’t a one-man show. The support of another patient, providers, and — of course — my physical therapist whom I’ve known for more than 20 years, helped propel me through adversity and reveal how much undiscovered potential I had. By the time I was on continuous oxygen, the support, knowledge, and skills I gained had completely changed my mentality and helped me live a life on oxygen I didn’t believe possible.
Tips for Staying Active On Oxygen
- Find what level of activity you can tolerate and what is safe for you. A physical therapist may be your best resource for that.
- Find activities or exercises you enjoy that will keep you coming back for more. As far as workouts go, I have found that convenience is key.
- Track your workouts or activity.
- See if there are other patients who live an active lifestyle on oxygen that you can connect with.
- If you would prefer to work out at home like I do, getting some equipment set up in an area will make it more convenient.
- If you need financial assistance for equipment, there are grants you may apply for (I received a grant from the Joey Fund to help fill my home gym).
- Take a look at what oxygen equipment might be available to you (e.g., portable concentrator, home concentrator, extension cords). More options mean more flexibility. An extended battery for a portable concentrator can allow more time outside.
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