Just a little summary .
Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness started with Vomiting, diarrhea ,purple lips & crossed eyes. My kidneys had shut down on me so I was put on Dialysis , at first the doctor's thought I've been affected with Ecoli in reality it wasn't that. Later on they noticed I was having blood clots and decided that I'll be taking lovenox shots for 3 months. I was there for a month and came back to New York and got hospitalized in Cohen Children Medical Center. While we were at this new hospital doctor's from Canada called saying that the genetic tests they took when I was there have came in and it came to the conclusion i am atypical h.u.s. My nephrologist right away let us know that I wouldn't need dialysis anymore because i've been able to go use the bathroom and been able too let out more than 300 cc also because my creatine was around 4.3 and dropped down to 1.7. I wasn't put on Soloris right away until November 10, 2011 & it's been great ! I receive it every 2 weeks and I don't feel any different. On the same day that I received my first dose of soloris it helped bump my numbers back to normal and eventually my creatine came down to 1.1
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Comment
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Comment by Cheryl Biermann on December 27, 2011 at 12:58pm -
Thanks for sharing your story, Ivette. Pretty scary stuff you went through. We are so happy to have you here, any time you feel like adding your two cents worth, go right ahead. It's really good for the other kids to see what
you have to say too. Welcome!
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Comment by Jessica Rios on December 26, 2011 at 7:36pm -
I'm so proud of you for finally opening up and sharing your story, this can help others the some way it helps you to learn about their journey with atypical HUS. I admire your courage and strength. Love you!
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