In February 2015, I received a diagnosis that I long feared. I was diagnosed with Pulmonary Hypertension (PH) – a chronic and progressive heart and lung disease for which there is no cure.
In its simplest form, PH is high blood pressure in the lungs.
However, it is much more than that. PH works to narrow and constrict the pulmonary arteries, making blood transfer between the heart and lung difficult. The right side of the heart is forced to work at unsustainable levels to pump blood through the lungs and into the body. PH leads to the heart failure and premature death.
I lost my mom, Bonita, to the same disease when I was 12 years old. In 1992, little was known about PH. The first FDA-approved therapy was more than 2 years away. It was just as common to be diagnosed with the disease upon autopsy as alive.
My mom was admitted to the hospital on a Wednesday after fainting in a grocery store. She died the following Monday. An autopsy revealed she died from right heart failure associated with primary PH. I was devastated. My mom was 31 years old when she passed away – far too young.
As I grew older, I knew 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 throughout my high school and college years and often wrote research papers on PH. I allowed myself to wonder whether one day I too would be struck by PH.
And then it happened.
In February 2015, I was 9 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 during the cardio segments of my workouts. I had 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 woke up in the middle of night to cries from our young son and 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 leg. My chest was beating so hard and so fast that I felt as though my heart was going to explode out of my body. 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. Three days after my initial ER visit, I had an echocardiogram. The cardiologist called my husband and told him the results – confirming that my heart was grossly enlarged and 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. Twenty-three years of fear, agony, and prayer for a better result all crashed together from those six words.
I was devastated. Instantly I 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 prospect of the same thing happening to my boys.
Pulmonary Hypertension Treatment
While my universe was spinning, my husband and doctor immediately began discussing 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 physician 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.
I am learning 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. But 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 FDA approval of 14 therapies since 1995. There were zero before then.
Blue Lips Foundation
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 of how devastating PH is. Unfortunately, early diagnosis rates remain poor and have not improved in 20 years.
Seventy-four percent of PH patients are diagnosed in advanced stages (Class III, IV) of the disease. Generally, PH patients will see three or more doctors before an accurate diagnosis is made. The time span between symptom onset and diagnosis is typically 2.8 years. For patients who do not start timely treatment, their life expectancy is only three years after symptom onset.
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 and raise their awareness and understanding that otherwise common symptoms may 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.
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 become a long-term survivor of PH. Until a cure is found, PH patients require as early a diagnosis as possible to continue to lead lives on their own terms.
My dream is that through our work at Blue Lips we are able to give others the same hope I have developed – that even with PH, you can continue to live your life.
Blue Lips Foundation is hosting its 2016 Gala on November 5, 2016 at the Prairie Meadows Event Center in Altoona.
The evening features a keynote address by Dr. Ronald Oudiz of the UCLA Liu Center for Pulmonary Hypertension. The evening includes a dinner program, live and silent auction, and entertainment by Des Moines band, The Nadas. Tickets are available through Blue Lips Foundation.
Learn more about Pulmonary Hypertension and the Blue Lips Foundation. Follow us on Facebook, Twitter, and Instagram.
Meredith Wilharber knows all too well about Pulmonary Arterial Hypertension. It took her mother’s life when she was 12 and reappeared in her own life when she was diagnosed at 34. She is a stay-at-home mom to two boys – ages four and two. Being told she had a disease known as the “silent killer” put the (ph)ight in her to do everything in her power to help others that are currently or will be in her shoes one day.
Meredith and her husband, Randy, founded the Blue Lips Foundation to further educate, raise awareness, and fund research dedicated to early detection and screening of the disease.