The Atypical HUS Foundation

April 2012 Blog Posts (4)

Bye Bye Stomi

Finally a chapter has closed in my life. I no longer have my colostomy and I truly miss it. Although it was a long process due to infection inside the incision luckily it wasn't as bad as the sergeants thought it would be. On March 26 my life came back to be what I've been wishing for , for approximately 6 months and i'm beyond glad God has gavin me the chance to see myself progress. It doesn't matter if i'm an a-typical HUS patient cause nobody said life would be easy , so as a normal…

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Added by Ivette Rios on April 20, 2012 at 8:52pm — 3 Comments

Update on BK

Well, Nathan did respond to the dose of Cypro, however, his creatnine jumped again so it's time to biopsy the kidney.  Everything else looks good, (I got that oh oh feeling when his blood pressure sky rocketed earlier this week).   The thinking is the BK is in the kidney or because we've lowered the anti-rejection meds so much in response to the virus that he has a little rejection.  There is also the added interesting tid-bit that the kidney does not like prograf to begin with.  It also…

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Added by Cheryl Biermann on April 17, 2012 at 9:13pm — 1 Comment

Nuerology Update, BK Virus, ect.

Today we had our much anticipated visit with neurology.  There were some indications via medical sources  that neuroloical conditions could improve after transplant and/or Soliris. 

 

Chorea was still evident but was called mild.  Medication could be given for it, but he'd been on it before, (Depakote), and it caused his blood levels to plummet so we are not going down that road.

 

In a year, provided there are no seizures, he will be given another EEG, if it is…

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Added by Cheryl Biermann on April 9, 2012 at 4:28pm — 2 Comments

Update on Anna Finley and questions

It is been crazzy here seems one thing after another. She had her ear surgery in December, then in January she started having back pains and blood and proteine in her urine. Then in February she had stomuch paint to the point she totally stoped eating doctors  diagnosed her with Lactose intolarance, telling me she cant have any dairy product and putting her on 3 different medications for it. I looked up on internet about Lactose intolarance and finding out Anna never had any of the simptoms…

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Added by Svetlana Finley on April 4, 2012 at 5:17pm — 4 Comments

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