Does life after a PNH diagnosis ever get easier? It did for me

The road may be long, but it helps to take things one day at a time

Brandi Lewis avatar

by Brandi Lewis |

Share this article:

Share article via email
An illustration of a woman riding a roller coaster winding through a forest, as the banner image for

Does the battle with paroxysmal nocturnal hemoglobinuria (PNH) get any easier? This is a question I asked myself at the start of my journey. The finality of the words “you have been diagnosed with PNH” made me feel like everything I’d ever known or desired was ending or untrue. I was on an emotional roller coaster and didn’t know where I was headed. Defeat and failure showed in my body language. I thought my life was over.

If you have ever felt this way, just know that you are not alone. After my diagnosis of aplastic anemia and PNH, the road ahead looked long, with no signs of positivity. I feared what the future held for me. I didn’t know if I’d continue to visit hospitals several times a week and get poked and prodded repeatedly.

To combat these feelings, I told myself, “Take it one day at a time. Don’t look ahead and don’t look behind you. Focus only on the present moment.” This constant reminder helped me understand that the journey would be long, but to make it to the finish line, I needed to think only about what was in front of me right now.

Recommended Reading
An illustration of a woman riding a roller coaster winding through a forest, as the banner image for

Reflections on the power of hope and life with chronic illness

Feeling like myself again

In the 15 years since my PNH diagnosis, life has gotten easier. My health has improved, and I have learned how to navigate my symptoms. I enjoy traveling, working, building relationships, and spending time with family and friends. I check in with my body daily and have learned how to listen to it and recognize when I’m experiencing issues.

My blood disorders bring on a plethora of symptoms, including nosebleeds, bruising, fatigue, and brain fog. I balance the need to live a normal life with monitoring my health. I don’t push my body past its limits, but I don’t let it keep me from having a good time, either.

Following my diagnoses, I was given a form of antithymocyte globulin, or ATG, therapy. It took a year for the immunosuppressive treatment to put me into remission, but during that time, I was able to give my body the rest and care it craved.

Once I started feeling better, I slowly began to do normal things, such as going to the grocery store or taking a walk in the park. I knew that if I was going to live my life, I’d need to slowly reestablish a normal routine. After two years on ATG treatment, I had my routine down and felt like I was becoming me again.

The road ahead

I always remind other people with blood disorders that this journey is not a sprint, but a marathon. I wish I would have known that at the beginning. My mindset was that I’d take medication that would quickly take effect, allowing me to return to my life within a few months. I wanted a quick fix that never came to fruition. Take it from me: Life after a PNH diagnosis is a marathon.

I will say my journey involved many breaks. Sometimes I seemed to be gaining momentum and feeling better, but there were also times when I had to take it easy and sit on the couch to let my body heal. I encountered many bumps on the road that either diverted my path or forced me to pause until I could catch my breath.

After enduring the bumpy moments, my journey became smoother. I can now work a full-time job, exercise, go out to eat, and hang out with family and friends — as long as I take precautions to protect my health.

Even if you can’t see the light at the end of the tunnel, know there will be a day when the light shines bright. I hope that day brings you such joy and understanding that you can survive anything put in front of you.

Stay strong, my friends!

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.