Living on Oxygen 24/7

By Alexis Trotter, 28, adult with PH

When I was 4 years old, I went to see the doctor because I had a weird allergic reaction. It was at that very appointment where it was discovered that I had a heart murmur. After further exploration, the cardiologist discovered that I had a large hole between the right and left atrium chambers of my heart. It turned out that I had been born with a congenital heart defect. News of this was devastating to my parents. Later that year, I had surgery to “patch” the hole, but my discharge from the hospital was short lived due to a complication after surgery. After being diagnosed with a significant pericardial effusion (an accumulation of fluid around the heart), I spent 10 more days in the hospital.

After overcoming the hurdle of major surgery, I tried to restart my life and be as normal as possible. But, during the next three years, I began to experience the same symptoms that I had before my open heart surgery. I had very low energy and quickly tired, and it was progressively getting worse. For years, my mom went to the doctors telling them that something was wrong, but they ignored her and told her that everything was fine and that I was just doing it for attention. Finally, following some diagnostic testing, my doctor discovered that I had a rare progressive heart and lung disease called branch pulmonary artery stenosis. The scary part about my diagnosis is my pulmonary arteries are continuing to shrink, and there is no one who can figure out why. My cardiologist at the time sent my records to everyone in the country he thought could possibly help me, but no one knew what to do for me. As my illness progressed, the pulmonary artery stenosis caused me to develop pulmonary arterial hypertension (PAH).

You would think after overcoming the trauma of open heart surgery and having multiple angioplasties growing up, that I would have this chronic illness thing figured out. But everything changed when I turned 20 years old. It was after a year-long battle with a pulmonary embolism that my doctor told me I would have to go from wearing my oxygen only at night (which I had been doing for a decade) to 20 hours a day. I was devastated. I remember just looking teary eyed at one of the residents, and he said something to the effect of, “You’ll be okay, you can still meet nice guys.” And I answered, “Meet a nice guy? No guys will look at me with this.” I was only 20 – how was I going to experience life with an oxygen tank attached to me? For my entire life up until that point, my disease was my thing, my secret. Despite getting short of breath really quickly, I looked relatively normal, and I could tell people about my disease at my own discretion and on my terms. I felt that now that I had to wear oxygen all the time, I was essentially announcing to the world that something was wrong with me.

Once I was discharged from the hospital, I went home and wallowed in self pity. I didn’t leave my house for weeks. To lift my spirits, my mom planned a surprise trip to Disneyland. I remember putting on my oxygen before we headed into the park, and I got so emotional. It was after that outing that I realized that this was going to be my “new normal,” and I had to make the best of a tough situation. The first thing I did was to change the negative dynamic I had with my oxygen tank. So, I decided that my oxygen tank was female and named her “Stella the Tank.” And, instead of thinking about how Stella was keeping me from achieving my goals, I began thinking about how I was going to achieve my goals with Stella in tow. I began to put together a new plan for my life.

Originally, I wanted to be a nurse, but I quickly came to the conclusion that I was not going to be able to handle such a physical job. Then, I began to think about all of the different staff members at my clinic and how there wasn’t that many female cardiac sonographers. That’s how I came to the decision to become one. Within the next 2.5 years, I earned a double AA degree in science and math. Afterwards, I eagerly applied for the ECHO program. After waiting for three years to get into this extremely competitive program, I finally got an interview. When asked why they should choose me over other applicants, I simply said, “I doubt that any of the other applicants you have interviewed have ever had a cardiac ultrasound before, let alone open heart surgery. I want to get into this field not for the paycheck, but to share my experience with other patients. I want to show patients who have the same disease as me that it is scary and it can be dark sometimes, but there is light at the end of tunnel, and I am proof of that.” I was accepted into the program the next month.

To make things less awkward with my classmates, I introduced them to Stella in our first week. When it was time for my preceptorship to begin, I had to wrap my brain around I how I was going to handle my oxygen in a clinical setting. My family came up with a quick solution: a backpack to take the weight off of my shoulder and extra batteries to keep me going throughout the day. It wasn’t easy, and I certainly had my doubts, but I finished the program and was chosen to represent my class as a speaker at graduation.

The same week I started my ECHO program, I took my first class with my Polynesian dance group, Ka Ohi Nani o Mana’ olana. I instantly fell in love with Hula and Tahitian dance. It was graceful, yet strong. And, it pushed me way out of my comfort zone. But, for the first year I was learning how to dance, I didn’t wear my oxygen tank. I felt like since I was learning this new skill with people who didn’t know me, I didn’t want to be known as the girl who wears oxygen. One day, I broke down and confessed to my Hula sisters and Kumu (our dance teacher) and told them everything about my PAH, my oxygen tank and my concerns about how they would view me. They instantly assured me that, of course, it didn’t change how they felt about me. They let me know that I shouldn’t be embarrassed about wearing my oxygen tank because it was going to help me become a better dancer. With that boost of encouragement, I entered my first Tahitian Dance competition. I was so nervous because I had only been dancing for a year, and I didn’t feel ready for the competition. I was worried what the other dancers and judges would think. So, I went out there with Stella the Tank and we danced like it was the last time we were ever going to dance. When I finished my solo routine, the judges applauded me – which is unheard of in the Tahitian dance world! I finished in the top five and couldn’t wait to do another. For my next competition, one of my Hula sisters helped me customize a smaller backpack to dance with. When I was getting ready at that competition, other dancers came up and told me how I inspired them and that they were looking forward to seeing me dance again. I ended up finishing in fourth place.

I would be lying if I said I have completely overcome my struggles with Stella the Tank. Things are definitely much better now, but there are still some days where it takes all of my strength to put my oxygen on before I go out. If I had to offer any advice to someone who has just been told they have to wear oxygen full time, I would tell them to surround themselves with friends and family who will support them through their struggles and reassure them that they are still beautiful. Don’t let your oxygen tank define you: You just happen to wear one, but it doesn’t wear you.