5 ways I coped with my disease coming out of remission

How a columnist geared up to fight PNH and aplastic anemia

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by Brandi Lewis |

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Recently, I was asked to provide advice to a fellow patient on how I handled coming out of remission from aplastic anemia and, at the same time, being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH).

Remission refers to the absence of symptoms or disease activity. In my case, test results had indicated that my aplastic anemia was active again.

As I thought about the patient’s question, I realized it’s important for anyone experiencing disease remission to prepare for the chance that their symptoms will flare up again. So I pose this question to my fellow patients: What would you do if you found out you were no longer in remission?

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For me, it all began with a routine six-month checkup, at which I received the results of my most recent complete blood count (CBC) test. I felt great and wasn’t experiencing any symptoms, so I expected to receive good news and be sent on my way. Having to see my doctor only every six months was bliss. I didn’t know that this day would change my life.

I sat in the room as my doctor looked over my CBC. Then she said, “You are out of remission from aplastic anemia.” The letdown was tremendous, and my body froze. I didn’t know how to react.

I’d known my doctor and her family for many years, so her eyes began welling up with concern for me. I tried to console her, saying “It’s going to be OK” and my two favorite words, “I’m fine.” In hindsight, maybe I was subconsciously telling that to myself.

After recovering from the initial shock, my doctor said she wanted to test me for PNH. She was doing so out of caution, as aplastic anemia can be a risk factor for PNH. She didn’t expect the results to be positive.

Much to my surprise, I received that daunting call several days later. I was now diagnosed with two rare blood disorders and had to prepare for another round of treatment.

“Now what?” I wondered. I had so many questions about my future, including how this news would affect my relationships and ability to have children, what the treatment options were, and how long my recovery would take.

Whether you’ve been diagnosed with a rare condition or learned that your disease is no longer in remission, the following are five things to consider.

1. Take time to feel all your feelings

Upon hearing unexpected news, I felt like I needed to push my real feelings down to project that I was fine. But I knew my emotions would surface at some point, so I soon decided to let myself feel all of them. Everything came to the surface — sadness, disappointment, anger, frustration. I felt it all. After a cry fest, I felt like I had the energy and strength I needed to fight my battle. That wasn’t a one-time situation; I cried many times, and it became part of my therapy.

2. Understand all your options

You cannot battle an illness without a team. Mine included my doctors. I wanted to hear their expert perspectives, so they talked me through my options. Understanding how I’d battled aplastic anemia the first time helped me realize how I could battle it again, alongside PNH.

3. Do your own research

Doing research on credible websites can offer additional helpful information. I knew that I was in a vulnerable state, so while I did a little research about my two blood disorders, I didn’t go down the rabbit hole. Still, reading about how other people dealt with similar situations helped me feel less alone.

4. Do something fun

I knew I was about to start fighting for my life again, so I did something fun to get myself out of my head. It helped me understand that life would continue and I’d one day have my laughter, smiles, and joy back.

5. Find gratitude

Practicing gratitude helped me understand that no matter how hard and sad life was, I still had things to be thankful for. Finding one of those each day helped me keep fighting my battle.

No matter where you’re at in your health journey, it’s important to keep moving forward. These five tips are what helped me do it.

Do you have any other tips you’d add to this list? Please share in the comments below.

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.


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