JaneDoeMT's interview
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How did all start?
Fever, abdominal pain, gas, diarrhea
Do you already have a diagnosis? How long did it take you to get it?
Wednesday saw urgent care, misdiagnosed with Rotavirus. Back to urgent care on Friday, got sent to ER. At hospital received correct E. coli D+HUS (Diarrhea antecedent Hemolytic Uremic Syndrome). Admitted to hospital and life flighted to Children’s Hospital Colorado on Saturday. Currently in ICU.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nephrology, cardiology, neurology, have all been involved.
What has been the most useful thing for you so far?
Sedation.
What have been your biggest difficulties?
Neurological symptoms
How has your social and family environment reacted? Have your social or family relationships changed?
Overwhelming support.
What things have you stopped doing?
Currently in ICU
What do you think about the future?
Uncertain
So far, which years have been the best years in your life? What have you done during them?
Only age 2 1/2.
What would you like to do if you didn’t have your condition?
Be home.
If you had to describe your life in a sentence, what would it be?
Just beginning.
Finally, what advice would you give to a person in a similar situation?
It gets much much worse before it gets better.
