How sickle cell led me to normalize the uncommon — like being pregnant

Years ago, I mistook a pulmonary embolism for what I thought was a minor sickle cell disease vaso-occlusive pain crisis, a mistake that could easily have proved fatal. I promised myself afterward that I would never trivialize my symptoms again.

As it turns out, that’s easier said than done.

Last year, as winter began, I became more fatigued than usual, and it wouldn’t go away, not even after my usual exchange transfusion. I also noticed that I was urinating more frequently than normal. I thought I might have a urinary tract infection, although I’d never had one before, but as someone living with sickle cell, I know infections can develop more easily because of reduced immunity.

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Taking the test

I also noticed I’d been using less pain relief medication than usual.

This was significant because one way I monitor symptoms is by paying attention to my medication use. With each menstrual cycle, I typically experience sickle cell pain, for which I take pain relief. Using less medication usually means one of two things: Either the pain has been less severe than normal or there’s an issue with my periods.

I assumed it was the former, but I do not formally track my menstrual cycles. I decided to take a pregnancy test. In fact, I took two.

One simply indicated whether or not I was pregnant, while the other estimated how far along I was. Both confirmed I was pregnant, and the second displayed “2-3,” which I took to mean two or three weeks.

My first priority was to inform my medical team. That’s important because a pregnancy can affect blood cross-matching and therefore influence what donor blood can be used. I am on an exchange transfusion program, so my team needed to be made aware. Also, many medications are not considered safe during pregnancy, so my healthcare team would need to review my prescriptions and replace with safer alternatives any medications that might pose a risk to the baby.

I was asked to attend an early pregnancy scan about a week later, and it was there that I learned that I’d misunderstood the test result completely. The “2-3” refer to months, not weeks. I was approaching the end of my first trimester. I think I might have fainted if I hadn’t already been lying down.

What I learned along the way

I like to think that I am vigilant, but how could I have been so far into a pregnancy without realizing it? I work hard to monitor my health, so I can identify patterns and trends. Doing this has helped me recognize recurring crisis triggers, identify the onset of avascular necrosis, and spot other important changes that have helped me manage this condition more effectively.

But living with a chronic condition such as sickle cell can make it easy to normalize things that are not actually normal, particularly if they do not feel severe. That can be dangerous.

After my experience with a pulmonary embolism years ago, my psychologist suggested that I may have learned to disconnect from symptoms as a form of self-protection or coping due to some of the traumatic experiences I endured throughout my journey with sickle cell. That observation came back to me when I learned I was pregnant.

Several months have passed, and I am delighted to share that last month I gave birth to my first child.

Pregnancy with sickle cell disease proved to be a fascinating and educational experience. In future columns, I’ll share more about that journey, including what I think went well, what challenges I encountered, and the lessons I learned along the way.

Are there any particular aspects of pregnancy and sickle cell disease you’d like me to write about? Let me know in the comments below, and I’ll do my best to cover them in future posts.

Note: Sickle Cell Disease 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 Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.