Dionthe Hope's story

I’m a kidney transplant recipient, so my immune system was compromised. I kept experiencing headaches that never fully went away, even after taking medication. Then I started getting vision issues, where my eyes would be super sensitive to light, I would get blurry vision and the blood vessels in my eyes would burst randomly. I went to the eye doctor, who said my vision was fine, and diagnosed me with dry eyes. I knew that wasn’t right, so I made an appointment with my primary care doctor.

An unexpected diagnosis

About five weeks later, I started getting what I thought were pimples on my face. I had clear skin and never had an issue with acne, so I made an appointment with a dermatologist. The dermatologist did a skin biopsy, as I’m at higher risk for skin cancer due to immunosuppressants.

My dermatologist called me and said he’d never seen a case of cryptococcal meningitis, but that’s what the pathology tests showed. He asked if I had an infectious disease doctor, which I did, who instructed me to immediately go to the emergency room (ER).

When I got to the ER, I had more blood work, MRI scans, CT scans and a lumbar puncture. The infection had travelled to my brain, which was the cause of my headaches. Scans also showed pretty big lesions on my lungs, but I had no symptoms.

I was in the hospital for two weeks. I started on IV anti-fungal medication and daily lumbar punctures to relieve the pressure on my brain. The anti-fungal medication tanked my kidney and I went into rejection. This started me back on dialysis, where I am currently waiting on a second transplant.

Living with the aftermath

I’ve experienced seizures since being diagnosed with cryptococcal meningitis but I never had a seizure before then. I have vision issues, memory issues, and the lesions on my lungs have gotten slightly smaller but haven’t completely gone away. I’m grateful to be alive, but meningitis has completely changed my life. The crazy thing is that doctors are still unsure where I got it from.

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