After eating and the getting on the road, I fell asleep to make sure I was well rested to take on the second leg of the journey. In Flagstaff, Arizona we stopped for fuel and I proceeded to get sick. Maybe it was bad food… no one really knows—actually, they do. I was going into heart failure but didn’t know it. We continued on the road trip, but I still was sleeping a lot. Unfortunately, my mother had to drive the whole trip by herself because I was just that tired. Something clearly wasn’t right, but maybe it was the food. Ok, not really but we didn’t know better at the time.
Upon arrival to Colorado Springs, I had another episode where I made my mother pull over so I could proceed to get sick outside of the car. Walking around at altitude was difficult, I couldn’t breathe well and it felt like I had an elephant tap-dancing on my chest in stilettos. Walking into a restaurant was quite interesting. Well, I didn’t actually make it into the restaurant, 10 feet from the car the elephant started his Irish jig, and 30 seconds later I was blue and on the ground. I woke up shortly afterward without much recollection of what had happened. However, I had previously had an episode like this four months prior while dropping off a portly cat at my former bosses house before I moved to California. Finally, my mother could see what the black-out episodes were really like. Still, we thought nothing of it. Well, my mom thought something of it, I was oblivious to it probably because of the invincibility complex that most 18 year old males have at that point in their life. After eating a late dinner, I felt a little better, perhaps it was the company, regardless sinister things were still taking place much to our unsuspecting wonder.
Eventually we made it back to the hotel, and walking from the parking lot to the room was a struggle. Horton the Elephant seemed to want to crush my heart with his size huge stilettos and bad dancing. Though out the night I was running to the bathroom, throwing up over and over. Another case of food poisoning? No. A stomach flu? No. The next morning I took a bath to clean up from the night of sweating and puking my guts out. After getting out of the tub I sat on the toilette. Next thing I knew I woke up under the vanity, my head hurting and my chest pounding. I proceeded to get dressed and sat at the foot of my mom’s bed. Not 5 minutes later she walked in with Michelle, my long time babysitter though elementary and middle school. “Mom, it happened again,” I said. I think all the color went out of her face at that point, and Michelle stepped in and said, “You’re going to the hospital whether I have to drag you kicking and screaming or not.” While still reluctant, I went with it. We stopped by Shrap Metal to get retainers for my piercings at the time (I mean who want’s lightning rods in their body if you code?). Off to the hospital we went.
Upon arrival at the hospital, I was taken into triage. The nurse put on a pulseox and took my blood pressure. While my blood pressure was normal, my oxygen saturations were low, but more importantly my pulse was through the roof. She thought the machine was broken… she tried the other hand… same result… she took it by hand… same result. Next thing I know I was being whisked to the cardiac area of the emergency room. There was a slew of doctors and nurses around me. All I can recall is an echo and chest x-ray at the time. I still didn’t want to stay, and I told the doctor the only way he was keeping me was if I had a hot nurse. Of course, the doctor delivered and my ICU nurse was gorgeous.
The next week was pretty intense, I think I had every test known to man run on me including the infamous right heart catheterization. The pulmonologist and cardiologist taking care of my case came in and said, “We are pretty sure you have pulmonary hypertension, but we’re not 100% sure. We need to send you up to Denver where they have pulmonary hypertension specialists to evaluate you further.” On my birthday, October 18th, 2002 I was transferred to St. Joseph’s Hospital in Denver, Colorado. Dr.’s Lang and Kenard wasted no time and completed the work up for pulmonary hypertension. After reviewing everything Dr. Lang came in and said, “Sean you have Pulmonary Hypertension… right now there are two medications, Flolan and Tracleer. Tracleer is new and with as advanced as your case is you probably won’t get any benefit out of it before the inevitable. Flolan is the Gold standard and would probably be your best bet. If you don’t do any treatment, you’re looking at maybe 2 years.”
Yeah, let’s just say my 19th birthday present from a doctor was what seemed like a death sentence. Fortunately, St. Joe’s was a teaching hospital. Every floor had tons of laptops. I was scared, but very compliant so the nurse brought me in a laptop. I spent most of the night researching PH on my own. Mind you, in 2002 there weren’t tons of resources that were easily accessible. After spending the rest of the night soul searching and trying to decide what I wanted to do I fell asleep. My mom arrived back at the hospital early that morning, and the doctor stopped in. I told Dr. Lang know that I’d go with the Flolan, after all, who really wants to die at 21—and that’s what he pretty much gave me. I was slated to have a central line put in and the rest is history.
After getting back to California about two weeks after this whole ordeal took place I met with my current pulmonologist. He told me at that point I wasn’t likely ever going to work or go to school. The same sentiment was resonated by the PH specialist I saw in Los Angeles. However, as I began increasing on the Flolan I began feeling better. My current pulmonologist never mentioned the work or school thing again. I told him I was going to go back to school and he supported me. Now I am a second year Medical Student at Western University of Health Sciences College of Osteopathic Medicine of the Pacific in Pomona, California. I’ve worked, I’ve loved, and I’ve lost but I couldn’t be more blessed.
The Pulmonary Hypertension Association contacted me in early 2009 about things they could do to make PHA better for young adults. In December of 2009, I was asked to join the Young Adult Advisory Board in which Generation Hope arose with special thanks to Colleen B., Britt R., Lindsay N. and myself. Shortly after that, I was asked to become a PHA PH Patient Mentor. In 2012, while getting my Masters of Science in Medical Sciences, I got a wild idea to come up with a cartoon series for children recently diagnosed with PH and so Lips Painted Blue (www.lipspaintedblue.com) was born. Needless to say, PH has shown me everything that I can do.
Mind you, I still have bad days occasionally, especially when modifying medications, life couldn’t be better. I will take the first part of my boards this summer and then finally head out to rotations to do good with actual patients. I will be able to take my experiences as a patient and relate to other patients to ensure they get compassionate and comprehensive care. My journey with PH may have begun back in 2002, but I look at each day as a new beginning. Every day gives me the opportunity to learn something new about myself. I couldn’t love life any more than I do, and continue to preserver. The good will always outweigh the bad, and the resources that are available for individuals are limitless. Through opportunities like the Tom Lantos Innovations in Community Service Award from PHA, if a resource doesn’t exist you can let your creative juices flow and create it.