Living with pulmonary arterial hypertension
United States of America
Training to be a nurse in cardiology, Lauren Janzen was no stranger to diagnoses of the heart, except when it came to her own, at just 21 years of age.
Returning from South Korea to her native Wisconsin, Lauren wondered if her shortness of breath was due to the 12-hour flight. Maybe she had a blood clot? She recalled having the same symptom while hiking in Asia and put it down to not being in peak form. Only a few days after returning, however, she fainted at the gym.
The medical tests ran the gamut, not turning up any dramatic results at first but of concern in certain areas and warranting further investigation. Then came the preliminary diagnosis: pulmonary arterial hypertension which affects the lungs and heart, a condition that slows blood flow and puts extra strain on the heart to pump. Lauren was referred to a more specialized hospital about 20 minutes away.
We met Lauren thirteen years on from her diagnosis and her positive energy was infectious as she opened up about her journey.
“I didn’t entirely anticipate what was to come but I also didn’t think ‘doom and gloom.’ I’m optimistic by nature. I received the best care and felt that my cardiologist had my quality of life as top priority, doing her best to accommodate my schedule so I could keep up with my responsibilities while receiving aggressive treatment.”
Working in healthcare, Lauren understood what it took to manage her own health, especially since treatments were quite intensive.
“I was very lucky to get all my care in one place. It was a little strange being nurse and patient at the same time. It was also a unique experience because many of the nurses who took care of me as a patient were the ones who trained me. I was living the trust so important in the patient-caregiver rapport, and I drew on many of the nurses’ attributes in my own work.”
Now married and with an adopted son, Lauren continues full-time work while going through graduate school. She credits a solid support system as one source of motivation for staying positive and determined. Lauren emphasised the support role that organizations often play in helping patients get their lives back on track.
“The Pulmonary Hypertension Association was invaluable, offering tools for any newly diagnosed patient who is scared to death and doesn’t really know what to expect. They connect patients and families with research and resources. Attending one of their international conferences and getting to know other patients showed me that there can be longevity despite the disease.”
Lauren also stresses the importance of patient advocacy and of patients learning all they can about their diagnosis and care options. The impact of relationships that are formed among caregivers, patients, families, and friends is so significant.
“I feel fortunate that my health is stable, and I can live like any other person. I work hard to be a ‘normal’ person and to have ‘normal people problems’ now. I know first-hand about the importance of hope and shared experience. Connection, meeting others is a powerful thing.”
WHF highlights the ‘Heart Heroes’ among us – they are the cardiologists, healthcare professionals, policy-makers, patients and their family members and friends battling, treating and beating heart disease. We are honoured to hear and share their stories that spread awareness and hope.
In these personal testimonials, any examples of diagnoses, care, treatment, medical processes, or recommendations are provided independently of WHF’s policy or scientific and technical outputs.