The story of Chloe
I was diagnosed with chronic thromboembolic pulmonary hypertension at the end of 2016, my sophomore year of high school. Getting to the diagnosis was quite difficult though. I was having a hard time breathing, along with chest pain, dizziness, and extreme fatigue. I was misdiagnosed multiple times with asthma, anxiety induced hyperventilation, and was told it was all in my head before settling on a severe case of asthma. Nothing my doctor was doing was helping me so my mom asked for a referral to a specialist at the nearby children’s hospital. At that point, I couldn’t even walk a few feet without being extremely short of breath and in tears because of how bad I felt. I remember wishing so badly that something bad would happen to me so everyone would see that there really was something wrong. When the appointment with the specialist finally arrived, I was excited and nervous at the same time; I was hoping for an answer but worried about what may be wrong. Within a few minutes of the specialist examining me, she found a heart murmur that I had never had before. That’s when she sent me straight to have an echo done, where they found that I had very high pulmonary pressures. They obviously didn’t let me go home and sent me to the ER because there weren’t any rooms open. The next few days were filled with many, many tests trying to figure out what was wrong with me. Ultimately, a right heart cath showed that both lungs were filled with blood clots and I was diagnosed with chronic thromboembolic pulmonary hypertension. Hearing that was a relief knowing that there was actually an answer for what I’d been experiencing but at the same time, completely terrifying. The doctors had never seen this before, especially in someone so young. Knowing that most of my doctors didn’t even know what the disease was made the situation even scarier. At one point, there was a doctor that told me I would never get better. I know now that he probably meant it in a different way than I took it, but hearing it said like that crushed me and it still stays with me today. I felt so alone and I constantly worried about what would happen to me. Other than immediately putting me on blood thinners, they didn’t know what to do with me. They contacted a doctor at UC San Diego that specializes in CTEPH and he said to wait three months to see if the blood thinners would dissolve the clots. During that time, I wasn’t able to do anything. I had to stop going to school and do online classes instead. I missed out on many of my favorite things like my winter band concert, school assemblies, and winter homecoming. The feeling of loneliness never left, and actually got worse. I was always worrying about my health and wondered if I would even make it to the next day. Many times, I was scared to fall asleep because I was afraid I wouldn’t wake up. The doctors realized after a month or two that the clots weren’t dissolving, so they scheduled an open heart like surgery in San Diego with the doctor there. When we were just a few days away from leaving for San Diego, the doctors saw how I was still getting worse and told us that if the surgery were any further away, I would be going into heart failure. That was hard to hear and really made me thankful that they were able to squeeze my surgery in on pretty short notice. We had to redo all of the tests when we got to UCSD to make absolutely sure I needed the surgery, which I did. I had the surgery on March 16, 2017 and it went pretty well, though it was much worse than the doctor had expected. My right lung was 90% full of clots and the left was 70%; he said I shouldn’t have even been able to breathe while just eating. Because there were so many clots in my right lung, a portion of the bottom died off. Though I’m not back to 100%, which I was told I wouldn’t be, I am much better than I was before surgery. I still get chest pain, shortness of breath, dizziness, and I am constantly fatigued. Not only has this disease affected my physical health, but it has also impacted my mental health. My anxiety is worse and I’ve never really been an extremely confident person, but I feel like this has taken any trace of confidence and self-esteem I had. I try to focus on the positives and how far I have come, but sometimes I can only see how far I have left to go and how I’m not where I wanted to be. I am incredibly thankful for the second chance at life I got, not many people get that, but sometimes I wonder if I am doing enough to live up to it. This disease has made me very insecure and I’m not exactly sure how to love myself like I should. I love reading stories about how people have overcome their struggles in life and how they continue to deal with them in daily life; it gives me hope that I will get to a place like that at some point. CTEPH has impacted me in so many different ways but I am definitely thankful for this experience. It showed me how much I take for granted, like my independence, education, being able to breathe, and so much more. It has showed me how important family and true friends are. I know now that it’s okay to not be okay and that it’s important to take care of yourself. CTEPH has helped me realize what career path I want to follow and I am currently going to school for radiology, and maybe eventually echocardiography. I want to help others like me and be like the many great medical professionals that were so kind and caring to me. For a while now, I’ve wanted to do something bigger than me; impact and help not just those with rare diseases, but with any disease including mental illnesses and more. I’m not sure what I want to do or how, but by writing articles about what I’ve gone through, I feel like I am taking a step in the right direction. I will continue to put my story out there in hopes that it will help even just one person and hopefully find other ways to do more.