|At a Blue Lips Foundation's kickoff event|
As I grew older, I dug into PH. I needed to know how someone so young and vibrant like my Mom could unexpectedly succumb to a disease so unknown and misunderstood. I researched the disease religiously throughout my high school and college years. I often wrote research papers on PH. I allowed myself to wander whether one day I too would be struck by PH. And then it happened.
In February 2015 I was 8 months post-delivery of my second child. Following his birth, I was eager to return to the gym, my normal workout and diet routine, and get back to “me.” The moment I was released by my doctors, I re-started my high intensity workout routine. I suffered mightily during the cardio segments of my workouts. I experienced extreme fatigue, shortness of breath, dizziness, and nausea – all classic signs of PH. For months I chalked it up to the “baby.” By February 2015, however, I could no longer ignore what my body was telling me. I knew from the years I spent researching PH that the disease may have a heredity component. I also knew the symptoms I was experiencing were signs of PH progressing throughout my body.
I will never forget the moment I could no longer ignore my reality. I awoke in the middle of night to cries from our young son. I went to his room to rock him. When I returned to bed, my heart was pounding out of my chest. I could feel the beats travel up through my neck and down my arm. My chest was beating so hard and so fast that I felt as though my heart was going to explode out of my chest. I knew I needed to see a doctor immediately – and I was terrified of what I would hear.
I was placed under a battery of tests to rule out a heart attack and heart disease. The doctors were pleased when those tests returned negative. Instead of joy, I was attempting to prepare to hear news I had long feared.
I told the physicians about my family history. Within three days of my initial ER visit, I underwent an echocardiogram. The cardiologist called my husband and advised him of the results – confirming to him that my heart was grossly enlarged and that a consultation with a pulmonologist was needed immediately. We were then told the news – “you suffer from pulmonary arterial hypertension.”
My world stopped right then and there. 23 years of fear, agony and prayer for a better result all crashed together from those six words. I was devastated. I instantly thought of my Mom, my two young boys, my husband and all those people I care desperately about. I remembered losing my Mom at such a young age, and I didn’t know how to cope with the prospects my boys not having me. I was inconsolable.
While my universe was spinning, my husband and doctor immediately began to discuss treatment options. What I didn’t realize at the time was that I was diagnosed as a Class II patient. Although I was feeling the effects of the disease, I was diagnosed early enough that options were available to me that weren’t so invasive and life-altering. My local doctor started me on a regimen of oral medications. I received a second opinion from the Mayo Clinic and a third from Harbor-UCLA. Fortunately, I have responded well (to present) to the oral regimen, and I remain on those therapies today.
As time has moved forward, I began to realize that I can manage PH. Yes, there are days when PH wears me down and beats me up. I feel it everywhere in my body – aches, pains, chest pressure and fatigue. I no longer dwell on those days. I have all the motivation in the world to beat this disease when I look at my family. They support me. They love me. They give me space when I need a break. Most of all, they tell me every day I am beating PH. I believe them. My tests results are steady. My markers tell my doctors I haven’t regressed. I beat PH by believing I can, and knowing that the science to treat and manage the disease has advanced beyond measure since 1992. Progress is being made every day. I believe the scientists who tell us they are finding new and improved ways to treat PH. The proof lies in the FDA approval of 14 therapies since 1995. There were zero before that time.
The Blue Lips Foundation was born out of this urgency to provide hope. I first had to find my own. I did that. I then turned my attention back to my time as a child. I lost my Mom because the disease was not diagnosed in time to allow her to receive a heart and lung transplant. The doctors didn’t know what they were looking for. Times have changed. The medical community now has an understanding (albeit not widespread enough) of how devastating PH is. Unfortunately, early diagnosis rates remain poor. It simply infuriates me that with the all the scientific advancements of PH that early diagnosis rates have not improved in 20 years. That is unacceptable.
PH had bit my family twice in my 34 years of life. I knew I needed to do something to change the course of PH for other families. Blue Lips was founded by my husband and me to do just that. 74% of PH patients are diagnosed in advanced stages (Class III, IV) of the disease. Generally, PH patients will see 3 or more doctors before an accurate diagnosis is made. The time span between symptom onset and diagnosis is typically 2.8 years. These statistics are harrowing. Along with our team, we work every day to change them.
Blue Lips is the only organization in the world dedicated solely to advancing PH early detection and diagnosis rates. We work tirelessly to educate the public and the “gatekeepers of medicine” as to the signs and symptoms of PH, to raise their awareness and understanding that otherwise common symptoms may just be the signs of this medical “silent killer.” Additionally, we fund researchers committed to developing novel diagnostic and screening tools that can be used by the everyday practitioner to “rule-in” or “rule-out” PH during routine medical examinations. We believe arming family practice physicians, pediatricians and geriatric specialists with easy to use tools will forever alter the course of PH by allowing those who harbor this disease an “earlier” diagnosis.
It is well understood that those who are diagnosed early in the process, and begin a monitored treatment regimen, stand a far greater chance to be a long term survivor of PH. Until a cure is found, PH patients require as early a diagnosis as possible to continue to live full and productive lives. My dream is that we, through our work at Blue Lips, are able to give others the same hope I have developed – that even with PH, you can continue to live your life. Early diagnosis is essential to give others this belief.
Today, I play with my boys. I respect and appreciate the precious time I have with them. Although modified, I work out at the gym and with my trainer. I travel with my husband. I enjoy “girls’ nights.” I manage our house and home. I no longer fear that my fate is the same as my mom’s, or that my boys’ fate is the same as mine as a 12 year old girl. Yes, I have PH, but I am me. I intend to keep it that way.
You can learn more about the Blue Lips Foundation at www.bluelipsfoundatio.org. Follow us on facebook, twitter (@BlueLipsORG) and Instagram (Blue_Lips_Foundation).