Living and Breathing through PH – and Hurricane Maria

by Luis Cortes

I was born in 1976 and raised on the beautiful island of Puerto Rico with a congenital heart defect called, Tetralogy of Fallot. Since no open heart surgeries were done on the island back then, my parents took me to the Women & Children’s Hospital of Buffalo in New York in 1978. I had surgery a few days before my second birthday.

I was blessed in that I didn’t need any more surgeries and, even though I couldn’t exercise, run, hike or play sports like other kids could, I had a pretty normal childhood. I went to college and even earned an MBA.

My PH Diagnosis

One morning, just a few weeks after my MBA graduation, I started coughing up blood. It was a lot, and I couldn’t stop it. I was hospitalized. It was then that I was diagnosed with secondary pulmonary hypertension (PH). My cardiologist didn’t know how to get treatment for me.

I spent years in and out of hospitals without much hope of getting better. In 2008, through Facebook friends who also have PH, I met Dr. Alvaro Aranda, a pneumologist specializing in PH patients. He quickly got me on two medications that helped my pulmonary pressure levels drop. In the nine years that followed, I only had one PH-related hospital visit. Thanks to my PH care and treatments, I was able to go back to work and buy my own home. My wife and I have been together for 15 years. While I’m currently on disability, I live day by day with a new appreciation of my life.

Hurricane Maria

One of my biggest challenges came in September 2017 with Hurricane Maria. I spent 51 days without power. During this time, I used a power generator. I had to purchase a respirator, like the ones used by painters, just to fill the generator with gas. Gasoline exposure can irritate my lungs and throat very easily. Daily costs were so high that I only had the generator for ten hours. I spent many hours during the day without my oxygen concentrator. This wasn’t life-threatening for me, but it still was risky.

Maria left my street and home damaged. I was very afraid to have an interruption on the delivery of my medications. I ran low, but a patient friend of mine who had been evacuated to Florida and her husband were able to help me get a week’s supply. The delivery came just in time, and I was lucky to continue my treatment. I know of patients who ran out of pills during the emergency. Some, like my friends that are on infusions, had to leave the island.

Living My Best Life

Thanks to my family and Christian faith, I am living my best life. I am lucky to have the best family support anyone can hope for. My family has been here for me since day one. They’ve taken care of me every time I’ve been sick. I’ve never spent a night alone at the hospital. My wife and my mother have slept in chairs or sofas during many cold nights at the hospitals. Every time I fall on tough times economically speaking, I can count on my parents to give me a helping hand to cover my expenses. That gives me peace of mind during moments that I need to heal and get better – even through Hurricane Maria.

The best lesson that I have learned while coping with PH is try to live your life as normal as you can. Don’t let your mind spend the whole day thinking about your disease. It has not been easy for me to do just that. For many years I refused to do many things that I enjoyed because I was afraid. One day, I realized that is not worth it to be fearful.

One has to live life without fear. You have to be careful, and follow your doctor’s advice, but never be afraid. Also, I never think about death. We will all die eventually, but only God knows when and how.