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Living With Sickle Cell Disease

It could be a matter of life or death for you or your loved ones.

Recently, I came back from a long trip from China when I started feeling ill. I was afraid I was coming down with a sickle crisis, so I checked myself into the hospital on Tuesday morning.

When I arrived at the hospital, according to the doctor, I wasn’t exhibiting signs of a crisis.

However, from the way I was feeling, I knew something wasn’t right because I had severe headaches amongst others. I was severely dehydrated, and my haemoglobin level was 78; I asked the doctor to check for blood clots, after which I was asked to go home because, in their opinion, I was ok.

Upon arriving home, I felt worse. So on Thursday, I checked myself back into the hospital again and insisted that I was feeling very sick and would not go home until they figured out what was wrong with me.

Because I insisted on having difficulties breathing and tightness of chest although the oximeter, blood work and EKG seemed to show all was well, they finally did a Ventilation-Perfusion Scan (VQ Scan). They discovered that I had a pulmonary embolism. I was then given anticoagulants and a blood transfusion because by this time, my haemoglobin levels had severely dropped, and I was terribly anaemic.

I can only imagine what would have happened had I not checked myself back into the hospital.

Why am I recounting all this? I want to fight the stigma that every uneasiness or feeling of sickness in sickle cell patients is a sickle cell crisis.

A lot of other conditions can trigger a crisis. That is why we need to be proactive and advocate for ourselves. Listen to your body, and if it doesn’t feel right, it usually isn’t. Always pray and ask God for help and guidance. I trust God will take care of you as He does for me.

What about you? Have you ever had a similar experience at the hospital? A misdiagnosis? Doctors telling you nothing is wrong when you know that all isn’t well? How did you handle it?

Please let us know in the comments below.

 

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