‘I make it a point to be busy living because there is so much I still have to give to this world and so do you!’

Aisha Woods Zarb-Cousin lives in San Antonio, Texas with her husband Adam (pictured, right), her 13-year-old stepdaughter Zion (left), and their dog Zoe. She recently earned a doctoral degree in counseling psychology from Our Lady of the Lake University in San Antonio, Texas. She retired from the Air Force in 2010 after seven years of active duty service. She loves all things wine and international travel. This is her story.

By Aisha Woods Zarb-Cousin

The year 2015 started off as a great year. I was planning my dream destination wedding to my best friend in the world and making the purchase of our new family home. My private psychotherapy practice was booming, and I had been accepted into a counseling psychology doctoral program.

As the year progressed, the on-again, off-again breathing issues I had experienced over the past few years came on and never turned off. I was diagnosed with scleroderma in December 2008, and I assumed it was simply getting worse.

By November 2015, I was going to see the pulmonologist every 10 to 12 days. I could no longer sleep lying down. I sat on a stool to wash dishes. Vacuuming our new home, which I weirdly enjoyed, was no longer an option.

We tried everything. We thought it might be allergies, not exercising enough or my diet. In December 2015, I was at the university where I served as an adjunct instructor, preparing to give my students their final exam. I was so winded from coming up a flight of stairs that I needed to lie down on the floor.

From there, I went to the emergency room. It was an eight-day stay that included the cardiac intensive care unit and an unsuccessful right heart catheterization that almost ended my life. Then there was an emergency medical services ride from San Antonio to Dallas, followed by rounds of testing, very low oxygen numbers and an enlarged right heart.

After all was said and done, I was diagnosed with pulmonary arterial hypertension (PAH), interstitial lung disease and congestive heart failure. My husband of only four short months and I learned that we couldn’t start our family in the coming spring as we had planned. I would not be able to carry. I was discouraged from starting my doctoral program as it could prove to be more stress than my heart or lungs could take.

Devastated does not provide an accurate description of what my husband and I felt in that hospital room. The doctors and staff were so kind to us, but they also delivered us news we simply weren’t expecting. At 32 years old, I was told that I would need a heart and lung transplant within a few years, I wouldn’t be able to give birth, and it would be in my best interest not to start my doctorate degree.

We drove back to San Antonio with 19 prescriptions and an oxygen tank that I would be required to wear for the foreseeable future. Even though I was a licensed professional counselor and was in the mental health field for several years, it took me a while to describe what I was experiencing. I was mourning the loss of life that had not yet occurred, I was angry at what PAH was taking from me, and I faced my mortality.

After going through the various emotional experiences of telling our close friends and family, my husband and I sat down and had a heart to heart. I will never forget his words: “We will either get busy living or get busy dying.”

I chose to get busy living. I became a member of the Pulmonary Hypertension Association (PHA) and started learning everything I could about this condition. I met a few people who have the condition and learned from their experiences. I learned all that I could about my medications and was able to make informed decisions about my own care.

In seven months, I was able to decrease my oxygen use to as needed. I decided to start my doctoral program. I am very proud to say that I recently completed my American Psychological Association (APA) pre-doctoral internship at Counseling and Psychological Services at Duke University in Durham, North Carolina. Now I have officially earned a doctoral degree in counseling psychology.

My husband and I have made it a point to travel as much as possible. We went to Rome, Malta, Aruba, Bahamas, Paris and Barcelona with my portable oxygen concentrator right alongside us.

Some days are more difficult than others, but I am grateful for every single day I am given. I make it a point to be busy living because there is so much I still have to give to this world and so do you!

So with a smile on my face and gratitude in my heart, I simply want to encourage every PAH patient, spouse, caregiver, supporter and PAH health care professional to simply keep breathing. You are wanted, you are loved and you are needed.

Does Aisha’s story resonate with you? Inspire and give hope to the PH community by sharing your experience with PH. Submit your story here, and read more stories from PHA’s Right Heart Blog.