In June 2017, I was diagnosed with idiopathic pulmonary arterial hypertension. I experienced the same diagnosis delay that many people with this disease have experienced. I had shortness of breath and constant fatigue for a while, but those symptoms didn’t signal any red flags to my doctors.

Eventually, an abnormal blood test result led to a cardiology visit where I was told I had a “sick heart.”

After two weeks in the hospital, I received my diagnosis and went home with a list of prescriptions, including diuretics, Revatio, Adcirca, Opsumit and heart medications.

In 2023, I found out I also was fighting pulmonary veno-occlusive disease. The doctors put me on IV Remodulin in late 2022, but my condition continued to decline. Then the doctors knew something else was wrong. My lungs were not functioning.

Tough decisions

In late 2022, I was admitted into the hospital, and my doctors put me on the waitlist for a double lung transplant. I was too sick to go home. The decision to receive a transplant was both tough and straightforward. It was a major decision that I could never reverse. But my health was so poor, I was quickly running out of options.

The idea that someone else had to pass away for me to live felt impossible to wrap my head around. I still grapple with the magnitude of that today.

While I waited, my mood cycled quite a bit from anxiety to fear to hope. I watched my health deteriorate. I was on high-flow oxygen and other medications to help me function. I needed prolonged support for the heart and lungs, known as extracorporeal membrane oxygenation or ECMO.

My kidneys began to fail as my heart and lungs got worse; I was even septic at one point.

Complications

After three months on the waitlist, I received my transplant in February 2023. Because of collateral veins, which the body creates when it is chronically deprived of oxygen, there was so much bleeding that the doctors had trouble closing my chest.

My surgery took six or seven trips to the operating room to get my bleeding under control and close my chest. I needed more than 300 units of blood and was on ECMO, bypass, a ventilator and dialysis. After surgery, I was completely sedated for weeks, and I spent six months recovering in the hospital.

I needed to learn to swallow, speak, use my arms and walk again. After coming home, I returned to the hospital several times because of infections. I still undergo testing and procedures to prevent complications that would affect my lung function.

Despite all this, I know how lucky I am to be alive. I don’t know my donor, but I wrote a letter to my donor’s family expressing my eternal gratitude.

Turning a corner

It wasn’t until my first anniversary that I really started to feel like myself again. The Patrick that I remember, before transplant and before PAH, is slowly returning. I can do just about everything I want again.

I enjoy the outdoors, hiking, camping, walking around Philadelphia, reading and advocating for people with rare diseases and those living with mental health conditions.

I volunteer for the National Alliance on Mental Illness and PHA by leading groups and consulting on mental health matters. I also volunteered at PHA 2018 PH International Conference and Scientific Sessions in Orlando.

Transplant is not a cure, it’s another chance at life. I will forever be immunosuppressed, so I’ve had to learn what I can and can’t put in my body and I’m on a strict medication regimen. I thank God, my donor, my phenomenal health care team, and my family and friends. I wouldn’t be here today without them.