Shortness of breath and extreme fatigue were part of Stéphanie Théorêt’s daily life when she entered her thirties about ten years ago. Knowing that her condition was anything but normal, she persisted with the doctors until the verdict fell: that of an orphan and incurable lung disease.
It took three years for the Candiacoise to have answers, a diagnosis of pulmonary hypertension (HTP). Countless medical appointments, examinations for asthma and electrocardiogram are linked in particular, according to the hypotheses of the doctors. A sleep apnea machine gave her hope as it seemed to lessen the fatigue to some extent, but the shortness of breath wouldn’t stop.
The 43-year-old clearly remembers several worrying signs.
“I was walking in the street and I was embarrassed so much I was out of breath. I stopped pretending to look at my phone at the bottom of some stairs. When I was carrying my grocery bags, I had to sit down because I was exhausted,” she says.
Ms. Théorêt also recounts an event that she considers to be a trigger. She was walking with a friend 20 years her senior and was out of breath. Her pulse was then 150 while her friend’s was 70. She knew something was wrong.
“The Worst Time”
Worried, Ms. Théorêt was quick to go to the hospital. Despite an emergency physician listening, the cardiologist sent her home the next day after inconclusive tests. However, she returned on the advice of another doctor she was seeing for sleep apnea. In the space of a few days, “everything has tumbled down”.
It was an iodine scan that made the diagnosis. The announcement of this one is a moment engraved in his memory.
“I was told my heart and pulmonary artery were swollen. I had to get an ultrasound soon. I started to cry. I remember that my eyes were constantly running during the exam. The doctor then told me that I had pulmonary hypertension,” she explains.
Explaining to him the disease that attacks the pulmonary arteries, he was also told that life expectancy with it was limited to five years.
“Time has stood still,” she says.
Ms. Théorêt is keen to share her story in order to underline the importance of early diagnosis and rapid treatment for patients. She frequently sees some who are not diagnosed in time and considers herself lucky. In her case, although she had to have an oxygen machine at night for a year, the medication worked. She can live a substantially normal life while respecting her limits and is monitored every three months.
“I couldn’t keep up with my friends on the bike, so I bought myself an electric bike and now they can’t keep up with me!”
– Stephanie Theoret
A decisive meeting
Ms. Théorêt confides that during her 10-day hospitalization, she felt very alone and helpless. A nurse suggested he meet a woman from the Pulmonary Hypertension Foundation of Canada, Judith Moatti.
“She had a pacemaker and was younger than me. It did me so good to meet someone who was living with the disease,” she recalls.
This contact also made him want to get involved. Ms. Théorêt has also been vice-president of this foundation for two years.
“There are elderly people who live with this disease, but also young mothers, then people are disabled and without insurance. In addition to talking about PH, we help these patients on a daily basis, ”she says.
Diagnostic complexe
Pulmonologist Jonathan Lévesque recognizes that lung diseases are complex to diagnose and important to demystify, since early-stage manifestations can be linked to several factors. He names, among other things, cigarettes and physical deconditioning.
Respiratory problems, he explains, are often caused by heart conditions and underdiagnosis is common. Some doctors tend to prescribe medication in the form of asthma pumps without having a final diagnosis and specific tests are not easily accessible, he observes.
In the case of pulmonary hypertension, many patients have to wait two to three years to receive the correct diagnosis. Without treatment, the average life expectancy of a person with PH is less than three years. This often invisible disease can affect anyone, regardless of age, gender, social or ethical characteristics, explains the Pulmonary Hypertension Foundation of Canada.
However, the disease in idiopathic form – without known cause – or hereditary is more frequent in women. Family history of the disease, other lung or heart medical conditions, pregnancy, altitude, certain medications and toxins, and obesity are risk factors.
(Dr. Lévesque. Photo courtesy)
Take care of your lungs
Other more common disorders also affect the lungs, such as chronic obstructive pulmonary disease (COPD). Symptoms include shortness of breath on exertion, cough and phlegm. One in ten people have it, says Dr. Lévesque.
“The number one risk factor for this disease is smoking. Anyone who has ever smoked, who is over 40 and has respiratory symptoms should be screened,” he said.
In the case of COPD, the mainstay of treatment is to quit smoking where appropriate, to engage in physical activity, to have a healthy lifestyle in general and to be vaccinated against pneumonia if possible, flu and COVID-19 which can affect the lungs. The disease cannot disappear, but the symptoms can be modulated, explains Dr. Lévesque.