Spoiler alert: That PNH diagnosis wasn’t a dream

On her 4-year 'PNH-iversary,' memories of a journey from a simple needle phobia

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by Erin Fortin |

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Going to the doctor for a wellness check or discussions about my health was unheard of during the first 24 years of my life. My needle phobia played mind games on me, tricking me into believing that the only reason for invasive blood draws, vaccines, and IVs was to cause pain. I viewed doctors as evil people, ordering these tests that in my opinion had no validity because no test was worth a needle; test results meant nothing to me.

As I started to show symptoms of paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, I ignored them, hoping they’d go away. I’d come up with rationales about why I was feeling the way I was. I had fatigue, for instance, because I was working and going to college, both full time. I had a migraine because I didn’t drink enough water or get enough sleep the night before. I was out of breath going up stairs because I was out of shape, even though I went to the gym twice a week.

All my medical concerns had reasons, so why go to the doctor and risk being exposed to a needle, right?

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My journey from fearing PNH to learning how to fight it

Finding answers

After a few years of ignoring my symptoms, in 2019 I urinated blood for the first time in the middle of the night. Rubbing my sleepy eyes to ensure I was seeing correctly and realizing I was, I was left petrified. I went to a walk-in clinic that morning and was diagnosed as having a urinary tract infection (UTI), but was told to follow up with my primary doctor because it could be a sign of cancer. Cancer?

I drove immediately to my primary physician without an appointment and waited until a doctor could see me. But they gave the same UTI diagnosis with instructions to follow up with a urologist. I called one as I walked out of the building, and luckily, they had a cancellation the same day, so off to the third doctor I went. That led to another misdiagnosis, this time saying I had kidney stones. Because it was a noninvasive diagnosis, I accepted it without question and moved on with my life.

A month later, a simple stomach virus caused a PNH flare, landing me in the hospital with declining blood counts. I was given a blood transfusion, along with head-scratching stares from doctors who were questioning what was happening to me. A bone marrow biopsy and a flow cytometry later, I was given my PNH diagnosis.

In the days following, I went to bed praying the tests weren’t accurate and woke up every morning hoping it was all a dream. As someone who’d never go to the doctor and would cry instant tears at the sight of a needle for a blood draw, I found it unbearable when told that I’d have to be on an IV infusion treatment schedule for the remainder of my life. I’d never wanted something so badly as for that to be a dream.

Four years later

The road ahead with PNH looked defeating, intimidating, painful, and scary until I began connecting with other PNH patients. Watching their journeys through social media inspired me to think that if it was possible for them to live happy lives with PNH, it was possible for me to do it, as well. Not only have I achieved that happy life after my diagnosis, but I’ve also become stronger than ever because of my medical experiences.

As I approach my four-year “PNH-iversary” (as I like to call it), I reflect on what these years have brought me: a beautiful wedding and marriage with my wonderful husband, John; our adorable baby girl, Joelle; new friends with PNH along with others with different rare diseases; and a stronger mindset when it comes to handling life’s adversities.

I’m so happy you’re here reading my column. Join me on this journey as each week I discuss all my trials and errors when it comes to living with PNH, along with my successes, failures, and game plans for a hopeful future!

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.