Clear Communication Helped Me Navigate the Diagnostic Maze

The most commonly asked questions I get about my pulmonary hypertension (PH) are: what were your symptoms prior to diagnosis, and how did you get diagnosed?

People in the PH community are always keen to know the answers as the disease is often left undiagnosed in its early stages or mistaken for conditions such as asthma, anxiety, or a lack of fitness — which can have devastating consequences. Not receiving the appropriate medication can also have a major long-term impact. 

The main reason for this delay in diagnosis is a lack of awareness. As PH is so rare, affecting only 6,000 to 7,000 people in the U.K., understandably it is not the first thing physicians might think of when people complain of being breathless.

It may be comforting to think of doctors as all-knowing, but most people with a significant medical history would sadly tell you this isn’t always the case. While the majority of healthcare professionals I’ve come across since my diagnosis have been amazing, there have been a few exceptions. 

I’ve had a couple of doctors who hadn’t heard of my condition or knew very little about it — it can be slightly disconcerting when a doctor looks up your disease in front of you! One particular experience that sticks out to me was when I visited a new GP and mentioned my diagnosis, and they just looked at me and said “oh dear oh dear, well how do they think that’s going to pan out then?” which might be the least comforting thing someone can say to a newly diagnosed 22-year-old. They then proceeded to try and offer me a prescription for sleeping pills as I “surely must be struggling to sleep.”

This type of frustrating experience is common among those living with a rare disease. One way to tackle this is through raising awareness, particularly about the symptoms specific to pulmonary hypertension to boost the chances of early detection.

PH symptoms vary from person to person but there are a number of common threads. Most people experience increased shortness of breath. For me, it was a strange sensation — not just breathlessness, but a real pounding in my chest when walking up stairs or riding my bike, etc. Another common symptom is swelling in the ankles.  

I have found that keeping a written log of my symptoms is really helpful. Not only does it allow me to personally monitor how I’m doing on a new medication and identify things that seem to make my symptoms better and worse, but it also helps me to get more out of my regular check-up appointments.

As I have mentioned in a previous column, I was lucky to be diagnosed relatively quickly, and I believe it’s partly due to clear communication about the onset and severity of my symptoms. This has been an important lesson throughout my PH journey: the more descriptive I am able to be about my symptoms, the more my team of clinicians are able to help me. 

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.