All posts on this blog that inlcude information about my medical care/treatment of Ornithine Transcarbamylase Deficiency (OTC) are for personal documentation and in now way are to be taken as "medical advice".

All management plans are customized to each patient's needs/disorder and my information is exclusive to my specific needs and are overseen carefully by my team at Strong Memorial Hospital in Rochester, NY.

If you have any questions about anything you read here, in regards to UCD's, please feel free to take what you have read directly to your own team.

Remember, I am just a patient, not a doctor. I would LOVE to talk to anyone about "everyday living" with Urea Cycle Disorders and would be happy to answer any questions...anytime at all.


Amy & J.J.

Amy & J.J.
Happiness is possible even while living with a UCD


Tuesday, May 18, 2010

ADULT Patient

Why can't the metabolic specialists that I deal with reagrding my OTC remember that I am an adult and as of Memorial Day weekend 2010 will have been diagnosed for 25 years and as a result I am familiar with this disorder and sometimes I know what is best for me....FRUSTRATING!!!!

1 comment:

  1. I am an adult and was diagnosed at age 49. Up til then I lived in hell every day. Now I live in hell some days. What really should be is a collaboration between us and our caregivers. Those of who are old enough and do not have brain damage as many do want to be part of the treatment plan and know the entire medical story.

    But remember as one specialist told me. Many of the doctors were use to dealing with babies that are now growing up and speaking out. Even the nutritionists are geared to babies and kidos.

    I am not to arrogant to believe I know more than them. I believe we need to share information to make my life better. I have just spent three days reading medical papers to determine if a problem I was having could be UCD related. Looks like it may be. So I put it together in a research paper and presented to my doctor. Now we are scheduled to talk about my problem that would have seemed totally unrelated to the disease. But see the problem. Maybe the UCD groups would not have known about the link regarding my findings if I had not been able to talk about it so well.

    Many other patients and families would be chasing tails with several doctors. UCDs touch far more than many or all of us realize.