“PH wasn’t her identity. Although she was open about having this condition, it never once held her back.”

Lindsey Wheeldon and Haley Willow were friends for six years after working together in one of Tampa General Hospital's wellness centers. Lindsey lives in St. Petersburg, Florida, with her boyfriend and two dogs, Cash and Stella Luna. Here is how Lindsey remembers Haley:

When I first met Haley, I had never heard of pulmonary hypertension (PH). I probably asked her a dozen times throughout our friendship what illness she was diagnosed with. Every time, she would answer in a way to make me feel I had nothing to worry about. She talked about it in such a casual manner that I never realized the severity of the disease.

To me, Haley was my outgoing, cheerful, beer-loving, ride-or-die bestie – who had to take some sort of breathing treatment every eight hours. PH wasn’t her identity. Although she was open about having this condition, it never once held her back. She practiced yoga, taught cycling classes and graduated from physical therapy school.

That being said, Haley also possessed an amazing ability to sustain a horizontal position on the couch for extremely long periods of time. We called it “couch rage.” One of her many slogans was, “I didn’t choose the sloth life, the sloth life chose me.” As Haley’s disease progressed, so did her ability to couch rage. My boyfriend dubbed her and me his “slothlings." He was Papa Sloth, and our couch was our trusted canopy. He urged her not to leave the canopy because it was dangerous, and it was crucial that we keep her safe.

Unfortunately, we couldn’t keep her completely safe from PH. At one point I asked if she thought she would live a full life. She looked at me and calmly responded, “Eh, probably not.” The way she answered told me that she was at peace with her journey. Who was I to question anything?

As the symptoms became more powerful, she spent more time in and out of the hospital. She had a constant cough. She was always out of breath. Her legs were swollen. However, she continued emanating this effervescent attitude that she would soon find stronger treatment, things would get better, and I shouldn’t be worried. Eventually, it turned from me seeing her take medicine every eight hours to sleeping in her ICU room.

Everything seemed to happen so suddenly. We went out on Halloween. She looked phenomenal. Everyone had a blast. Less than two months later, I received a call as I pulled into work that she was on life support. Without hesitation, I pulled out of the parking lot and went straight to the hospital in Orlando. The following evening, Dec. 15, 2018, Haley peacefully left the physical world. The room was full of so much love, yet so much heartbreak to see her go.

Haley was diagnosed with PH when she was just 3 years old. Following open heart surgery, she was expected to live only to age 12. She lived and fought until just shy of her 27th birthday.

After her passing, her mother, Tammy Willow, gave me one of her journals. Each day was filled with something she was grateful for. Many days, she was grateful for her health. Even though she silently suffered with this disease, she lived longer than any doctor ever thought she would. Haley lived by the quote, “To live would be an awfully big adventure.” And I think we can all find promise in that.