Lillian Cooke of Blue Island, Illinois, lives with her husband, daughter and dog. A stay-at-home mom, Lillian enjoys spending time with family and friends, painting, playing video games and listening to music. She was diagnosed with cerebral palsy at 2 years old and pulmonary hypertension (PH) when she was 34.
By Lillian Cooke
In June 2019, I was in the emergency room for elevated blood pressure. After evaluating me, the ER doctors found a hole in my heart and diagnosed me with pulmonary arterial hypertension (PAH). My diagnosis turned my world upside down. The doctors weren’t sure I was going to make it through the night; my oxygen level was 77 and my blood pressure was 220/147.
I was transferred to Advocate Christ Medical Center in Oak Lawn, Illinois, to receive better care. There, the doctor found that the upper chamber to my heart was broken. He estimated that my pulmonary hypertension (PH) had been undiagnosed for about 16 years.
As a last resort, I received an IV of Remodulin and had to wait three days to see whether it would help. I stayed in the hospital for 16 days on high-flow oxygen. During my stay, I had 400 pounds of fluid flushed through my body. By the end of my stay, I was able to get off oxygen.
In April 2021, I had open heart surgery to repair my chamber walls and the hole. it was the riskiest surgery I had ever had. During my surgery, the doctors discovered that my lungs were filled with blood. I was intubated and sedated for 12 hours while the blood was drained from my lungs.
in November, I got off Remodulin and Opsumit. Today, I am doing great but still take medication, watch my sodium levels and get my heart checked every four months.
In addition to PAH, I have spastic diplegia cerebral palsy. Though the two aren’t related, the cerebral palsy affects my legs and left arm, so I am in a wheelchair. Being in a wheelchair has helped my PH because I put less stress on my heart. In some ways, it is a blessing.
I hope my story gives someone else hope. I will never lose hope and I’m going to keep fighting until my last breath.