All the ‘unexpected doors’ that aHUS has opened for me
My entire life crumbled around me, but it's been rebuilt better than ever
I never thought there would be a day when I could sit back and reflect on the things that nearly dying has given me. But after years of struggling through an illness that used to be a death sentence, I can finally say I’m living again.
In September 2020, COVID-19 triggered a rare disease called atypical hemolytic uremic syndrome (aHUS)Â that resulted in kidney and liver failure, hypertrophic cardiomyopathy, uncontrolled severe hypertension, a mini-stroke, and hemolytic anemia. My life was forever changed.
My time in the hospital was traumatic and shocking. It took dialysis, plasmapheresis, 18 blood transfusions, chemotherapy (which I still do), immunizations, strict dietary changes, and more just to survive.
Once I left the hospital, I thought the worst of my battle was over. Nope. The reality of recovering from such an ordeal was horribly under-communicated. I wasn’t prepared for how physically weak I’d become. How exhausted I would be. How hard simple daily tasks would be. Climbing a flight of stairs meant climbing on my hands and knees.
Money issues soon followed. I couldn’t work because of my medical schedule. I couldn’t make payments on my home and eventually lost it, my car, and my career. This disease made me a prisoner in my own body and it had taken everything from me.
After my illness, doors open
My boys and I lived with someone for a while, and I began the arduous and lengthy process of applying for disability insurance. In the U.S., you can qualify for government-assisted income based on previous income if you become permanently medically disabled. But the process is known to take more than a year, and in the new world of COVID-19, things can take even longer. It took almost two and half years, two denials, and going to court to get approved.
Almost immediately, I took to the skies after I received my settlement. I’d begun traveling the world before COVID-19 and my illness, but for three years they had put a stop to all of that.
Traveling may not have been the most responsible thing to do, but this experience has taught me that life can change in an instant and I shouldn’t waste time sitting around. However, disability income is usually less than your previous income. So it would be impossible to support my children on disability alone.
Then the call came on a flight home from Greece. It was a man from the Social Security disability office asking me if I wanted to apply for disability income for my children. He said I could do that over the phone, so I did, from 30,000 feet in the air, and within 10 minutes I was told I qualified.
This was life-changing. I was going to receive disability for myself, for each child, and backpay. I felt hot tears roll down my cheeks. I was truly in disbelief. I wouldn’t have to stress about money ever again. And we could start a new life.
To top it off, a few months before my Greece trip, I was invited by BioNews to write about my rare disease journey for aHUS News.
My disease has opened so many unexpected doors. It’s given me the opportunity to stay home and be with my family, to begin a new career, and to have financial freedom. I still have tough days with my health. But after my entire life crumbled before me, it’s been rebuilt better than ever.
Note: aHUS 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 aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.
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