On Monday, March 4, 2013, I woke up. It was a simple act that I had taken for granted until that day.
The room was cold; red lights were flashing on a screen. From a machine beside me, I could hear the sound of my heart racing. Then came the heart-wrenching sounds of a young girl screaming and crying in the hallway, "No, no, oh, my God, no!" I later learned that her father had just died from heart failure, in the next room. I had never wanted to go home so badly.
I reached up to blow my nose, only to realize that I actually couldn't. My nostrils were filled with some sort of plastic apparatus that I was now connected to. I looked over, and there it stood, a mere three feet tall -- my oxygen tank.
As my tank and I were getting acquainted, we were brutally interrupted. I had just been through a heart catheterization and was now being informed that I had gone into right-heart failure, that my heart was three times its normal size and that I had developed pulmonary edema (my lungs were filled with fluid). I was told that my situation was touch-and-go, that I may never leave the critical care unit again, and that if I did, I might not have much time left and I might never again breathe on my own. I was diagnosed with severe Idiopathic Pulmonary Hypertension and was told that I probably also had Pulmonary Veno Occlusive Disease.
Pulmonary Hypertension is a simplified name for a complex health problem -– continuous high blood pressure in the pulmonary arteries of the lungs, resulting in an enlarged heart that can lose its ability to pump. The disease affects people of all ages and ethnic backgrounds, predominantly women. It is difficult to diagnose because the symptoms are common to many other diseases. Often people are misdiagnosed (as I had been, for five years) as having asthma or bronchitis, for instance, and therefore are not given proper treatment. It is most often discovered when it is already too late.
Pulmonary Veno Occlusive Disease is a clinicopathologic syndrome that accounts for a small number of cases of Pulmonary Hypertension and is so rare that the largest clinical study in the world consists of 11 cases, nine of whom died before the year-long study was concluded.
It was as though I had entered an alternate universe. It was a nightmare from which I could not wake up.
As the snow fell, I gazed out the window from my bed in the hospital and watched people in the distance going about their lives. I couldn't believe that only one day earlier, I, too, had been standing on that side of the window with all the hope in the world. Here I was now, on this side, stuck in a nightmare, where a future seemed unlikely. It was almost as if that window represented the barrier between life and death.
I had to get myself back over to the other side.
From the age of six, I have been creating music and performing. It has always been my passion. Four years ago, while on stage, I found myself unable to move in the way that I always had. I was struggling to catch my breath. Months later, again while I was performing, I was about to hit the high note of one of my songs, and I had a terrible coughing fit. I couldn't believe what was happening. I had never heard of anyone coughing on stage! It was becoming increasingly clear that something serious was going on inside my body, despite the fact that, at the time, no doctor had been able to diagnose my condition.
I grew up in New York City to parents with diverse cultural backgrounds and left home in my early teens to explore the world. From escapades on the streets of Spanish Harlem to singing in cafes on the sidewalks of Barcelona, my experiences served as fuel for my music.
As a singer and songwriter, it's essential that my vocal apparatus work. With one paralyzed vocal cord, ulcers all over my throat, and my new sidekick made of tin, I wondered how in the world I would be able to sing again.
I spent my days in the hospital forcing myself to imagine a future and praying.
All I can say is "AMEN" because, only days later, I was wheeled out of the critical care unit, accompanied by my new companion, whom I affectionately refer to as Steve Martin.
A few months later I was told that my best chance for survival was to have a double-lung transplant. After hearing the life-expectancy statistics and all of the complications associated with a transplant, I became committed to doing everything I could to get better. Suddenly, wearing oxygen 24 hours a day became the least of my concerns.
I had now been out of the critical care unit for a few months and my parents, my husband and I were so sick of all the bad news that we kept discussing the idea of saying, "To hell with it all!" and moving to Hawaii in order to find some peace. Even though we were all talking about how beautiful Hawaii was and how surrounding myself with beauty and leading a peaceful lifestyle could help me get better, what we were really saying was that perhaps there was nothing that anyone could do for me, so we were all better off spending my final moments in a beautiful place rather than in a hospital.
In the meantime, I was becoming more and more acquainted with my tank. I was experiencing a whole new world. I was so short of breath that I could hardly make it to the end of the block. Just walking around with a tank was uncomfortable enough. People stared at me strangely. It was almost as if they thought that because I was wearing oxygen I couldn't see them.
I decided that I was DONE WITH the discomfort of my new life, that symptoms were only symptoms, and that I had a choice to either let them rule me or to live my life as well as I could, despite them.
I looked at my tank and he looked at me, almost as if to say, "I am your friend. I'm only here to help you. We can go everywhere together. It will be a lot easier with me around. Don't you worry; I will supply you with the air that you need."
I knew then that it was time to not only accept my tank but to turn him into my best buddy. I went through a few names, saying them out loud, but he didn't seem to like any of them. Finally, it hit me: Steve Martin!
When I said the name, he was so happy! It was official. That day, my sweet little tank, who sleeps beside my bed at night and is the first person I see in the morning, became “Steve Martin.”
I continued to shift my thinking. I changed my diet, switching to a plant-based lifestyle, went to pulmonary rehabilitation three times a week, worked out on my own, and became committed to doing everything possible to get better.
I force myself to keep an image in my mind of the future that I want to see. I believe that our minds are critical when it comes to influencing our bodies, so I'm very strict with myself when it comes to my thoughts. When symptoms arise and things get scary, I let all hell break loose for about five to 10 minutes, and then I make myself switch gears by focusing on all of the lessons I'm learning and reminding myself of just how far I've come.
Despite the fact that I would do pretty much anything to regain my health, I do feel that, as a result of this experience, I am learning invaluable lessons that I may never have had the opportunity to learn otherwise. Facing your own mortality definitely wakes you up and gives you a deeper perspective. I've learned to value the moments of my life and the people in it in a way I never had before. I used to think it was all about attaining a goal. I now realize that just being alive is the actual gift. Anything beyond that is an added bonus.
I am so grateful, that after all these years, I'm back on stage performing -- this time, with an added band member made of tin! For performances, he wears a colorful tie. Yes, he truly is a "wild and crazy guy."
It was an incredible feeling to debut my new songs, especially "Be Brave," to a sold-out audience last month, just a little over a year after I was released from the critical care unit. The concert was given for the benefit of the Pulmonary Hypertension Association.
My new song, "Be Brave," which is available on iTunes, is about making the choice to move ahead despite one's circumstances. It's about refocusing one's mindset and choosing to see challenges, no matter how great they might be, as opportunities. Fifty percent of the proceeds benefit the Pulmonary Hypertension Association (PHA). To download “Be Brave” you can also visit chloesPHriend.com.
My trusted buddy Steve Martin and I wrote the song a few months after I got out of the hospital. The truth is that due to the grim prognosis, I had no idea how much time I had left, so I went on a bit of a compulsive songwriting spree.
As time went on, it became pretty clear to me that my fear of death was only making my condition worse. I was spending so much time trying not to die that I'd forgotten to actually live. I decided that rather than let the experience I was going through paralyze me, I would do my best to live my life despite the situation.