tinakraaima
I originally joined this site for support dealing with my husband's newly diagnosed illness of OTC deficiency. I was contacted by the executive director of the National Urea Cycle Disorder and received some much needed information and support. Sadly, I have to report that my husband passed away from neurological complications caused by this disease in May 2011. I would now like to be the support someone else needs while dealing with this or any other Urea Cycle Disorder. These disorders are rare but have dire consequences. I am also a registered nurse and nurse educator at a local university. The wrestle I experienced between my heart and my head was difficult to say the least, but I learned a lot about the "system", including, insurance, medicaid, and problems when it comes to probate after the death of a spouse. If anyone is dealing with the possible loss of a spouse in the near future, especially if there are stepchildren involved, please contact me so you won't have to go through some of the heartache I have.
My husband has a history of sarcoidosis in which he was basically asymtomatic except for a cough. On his last CT scan, the nodules on his lungs were larger, so he and the physician decided to ...
tinakraaima commented on tinakraaima's post Husband in coma after new diagnosis of OTC deficiency