An adequate healthcare strategy starts with listening to my body

I wrongly attribute symptoms to PNH when I should be paying more attention

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by Erin Fortin |

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As a patient with paroxysmal nocturnal hemoglobinuria (PNH), I experience a variety of symptoms every day. In a previous column, I discussed my most common symptoms, such as fatigue, headaches, and shortness of breath, but the list is much bigger.

Sometimes it’s hard for me to figure out the cause of what I’m feeling. A headache, for example, could be the result of my hormones and menstrual cycle or because I didn’t drink enough water that day. Yet I’ll automatically assume it was caused by PNH. The result is that I neglect my body by dismissing what I’m feeling.

I received a wake-up call about this during an appointment, when the doctor suggested that I should see a cardiologist. I had explained how my shortness of breath was continuously worsening, which diminished my quality of life. I thought it was because I’d switched treatment from Soliris (eculizumab) to Ultomiris (ravulizumab-cwvz). My doctor acknowledged that it could be due to my body adjusting to the new medication, but he wanted me to see a cardiologist to make sure nothing else was going on.

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Delay, then worry

At first, I dragged my feet making the appointment, because I didn’t think it was urgent. With my imaginary medical degree, I thought shortness of breath was normal for this disease and nothing could be done about it. The holiday season and my toddler running around were both keeping me busy, and the appointment slipped through the cracks.

The next time I saw my hematologist, he reiterated that he wanted my heart looked at and mentioned possible issues that could be going on. His main concern was pulmonary hypertension (high blood pressure in the blood vessels). At that point, I realized the severity of the situation, and I finally made the appointment with the cardiologist.

I had an echocardiogram and wore a heart monitor for three days. Before my follow-up appointment to discuss the testing, the results were posted at the online patient portal I had access to. Of course, I was curious to try and interpret the results before speaking to the doctor, which probably wasn’t a great idea.

The results indicated abnormalities that the doctor later said he wasn’t worried about. The heart issues indicated by the testing are minor and probably aren’t related to my shortness of breath, which was a huge relief. However, in the time between reading the results and seeing the doctor, I was upset and worried that something was wrong.

Sometimes I believe I’m invincible to other health issues because I already have PNH. But when I was upset about the results from the cardiologist, I realized how incredibly wrong my approach was. I don’t get a pass on other health issues just because I have PNH, and I need to take everything I feel just as seriously as I do with PNH.

Moving forward, I will be more conscientious about how I’m feeling. If things are happening that aren’t attributable to PNH, I should seek medical attention when appropriate. I will start having regular checkups again with my other doctors, including my dermatologist, gynecologist, and dentist, because they are just as important to my health as my hematologist is.

So here’s to a healthier me, beyond PNH!

Note: PNH 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 PNH News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.